Medical Home Manual - Data Resource Center for Child and

Measuring Medical Home for Children and Youth

Methods and Findings from the National Survey of Children with Special Health Care Needs and the National Survey of Children’s

Health

A Resource Manual For Child Health Program Leaders,

Researchers nd Analysts a

The Data Resource Center is a project ofCAHMI – The Child and Adolescent Health Measurement Initiative

www.childhealthdata.org

Measuring Medical Home for Children and Youth

Methods and Findings from the National Survey of Children with Special Health Care Needs and the National Survey of Children’s Health

A Resource Manual for Child Health Program Leaders,

Researchers and Analysts

Prepared by CAHMI – The Child and Adolescent Health Measurement Initiative

Oregon Health & Science University for

U.S. Department of Health and Human Services

Centers for Disease Control and Prevention National Center for Health Statistics

CDC PO #300614801-01

May 2009

Table of Contents

Page Acknowledgements ii

Introduction 1

I. Brief History of the Medical Home Concept 2

II. Assessment of the Medical Home Concept

2.1 Overview of the Surveys 5 2001 NS-CSHCN 2003 NSCH 2005/2006 NS-CSHCN 2007 NSCH

2.2 Overview of Methods and Content Used to Assess Medical Home 8

2.3 Differences in Methods and Content Used to Assess Medical Home 11 Differences in focus of assessment Differences in wording and content Differences in recall timeframes Additional considerations when using survey-reported data

2.4 Full Text Copies of the Medical Home Questions from Each Survey 13

III. Quantifying the Medical Home Concept

3.1 General Analytic Considerations 17 Data availability Identifying valid denominators Minimum criteria for having a medical home

3.2 Overview of “On Every” Scoring Approach 20 Survey specific considerations

3.3 Medical Home Measurement with the NS-CSHCN 22 Sub-component topic denominators Sub-component topic thresholds and legitimate skips Scoring sub-component topics NS-CSHCN medical home composite measure Resources for measuring medical home using NS-CSHCN data

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Table of Contents

Page

3.4 Medical Home Measurement with the 2003 NSCH 29 Sub-component topic denominators Sub-component topic thresholds and legitimate skips Scoring sub-component topics 2003 NSCH medical home composite measure Resources for measuring medical home using 2003 NSCH data

3.5 Medical Home Measurement with the 2007 NSCH 36 Sub-component topic denominators Sub-component topic thresholds and legitimate skips Scoring sub-component topics 2007 NSCH medical home composite measure Resources for measuring medical home using 2007 NSCH data

IV. Medical Home Findings from the NS-CSHCN and NSCH

4.1 Overall prevalence of medical home 42

4.2 Medical home prevalence by child demographic characteristics 46

4.3 Influence of survey design on medical home prevalence 49

Personal doctor or nurse criterion Question changes

V. Future Work to Refine the Measurement of the Medical Home

5.1 Other classification approaches 52 Nominal and ordinal measures “Across all” approach Continuous measures of “medical home-ness” Potential applications

5.2 Differential weighting of scoring components 55

References 56

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Appendices

Page Programming Code and Resources for Medical Home Measurement

2001 National Survey of Children with Special Health Care Needs Appendix A_1: SAS User Resources 51

Appendix A_2: SPSS User Resources 81

2005/2006 National Survey of Children with Special Health Care Needs Appendix B_1: SAS User Resources 113

Appendix B_2: SPSS User Resources 141

2003 National Survey of Children’s Health Appendix C_1: SAS User Resources 173

Appendix C_2: SPSS User Resources 209

2007 National Survey of Children’s Health Appendix D_1: SPSS User Resources 209

Other Resources Appendix E: List of Selected Publications Using Medical Home Data 253 from the NS_CSHCN and NSCH.

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Tables and Figures

List of Tables Page

Table 1: Desirable Characteristics of a Medical Home – AAP 2002 Policy 4 Statement

Table 2: Overview of Medical Home measurement in two national child 8 health surveys

Table 3: Across surveys comparison of methods and content for assessing 10 medical home

Table 4: Survey item numbers and brief description of questions used to 14 assess the AAP definitional components of Medical Home, by survey

Table 5: Measuring Medical Home using NS-CSHCN data elements: 23 Sub-component topic variables

Table 6: Measuring Medical Home using 2003 NSCH data elements: 30 Sub-component topic variables

Table 7: Measuring Medical Home using 2007 NSCH data elements: 37 Sub-component topic variables

Table 8: Percent of children meeting the performance threshold criteria 44 for medical home overall and within each measured sub-component topic, by survey

Table 9: Prevalence of Medical Home overall and by socio-demographic 47 characteristics

List of Figures

Figure 1: Medical Home measurement in national child health surveys 19

Figure 2: Scoring algorithm examples for NS-CSHCN Medical Home 26 composite measure

Figure 3: Scoring algorithm examples for 2003 NSCH Medical Home 34 composite measure

Figure 4: Scoring algorithm examples for 2007 NSCH Medical Home 40 composite measure

Figure 5: 2003 NSCH: Percent of children ages 0-17 with at least one 49 personal doctor or nurse, by child’s race/ethnicity

Figure 6: Comparison of NS-CSHCN medical home sub-component scoring 50 results by year of survey

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ACKNOWLEDGEMENTS

This resource manual was developed through support from the National Center for Health

Statistics (NCHS) as part of its ongoing joint efforts with the federal Maternal and Child Health

Bureau (MCHB) to improve quality of survey documentation. The contents of the manual

reflect nearly a decade of work sponsored by MCHB to define and specify methods to measure

Medical Home for all children and children with special health care needs (CSHCN). During

2001-2003, NCHS and MCHB funded the Child and Adolescent Health Measurement Initiative

(CAHMI) to conduct analyses and coordinate a national effort to further specify methods for

measuring Medical Home using the National Survey of Children’s Health and the National

Survey of Children with Special Health Care Needs. The project culminated in two reports and a

paper that set forth many of the measurement and scoring approaches, criteria and models

included in this manual.1-3

We acknowledge the contributions of expert advisors to the medical home measurement

effort over the past years from numerous individuals, including: Richard Antonelli, University of

Massachusetts; Stephen J. Blumberg, National Center for Health Statistics; James Bryant, Ohio

State Department of Health; Carl Cooley, Crotched Mountain Rehabilitation Center; Peter Van

Dyck, Maternal and Child Health Bureau; Christopher Kus, Association of Maternal and Child

Health Programs (now with NY Department of Health); Jeanne McAllister, Hood Center for

Children & Families; Merle McPherson, federal Maternal and Child Health Bureau (retired);

Maureen Mitchell, Family Voices; Paul Newacheck, University of California, San Francisco;

Barbara Starfield, Johns Hopkins University; Bonnie Strickland, Maternal and Child Health

Bureau; Jan Hicks-Thompson, Washington State Department of Health; Tom Tonniges,

American Academy of Pediatrics (now with Boys Town); Nora Wells, Family Voices. Members

of the MCHB Technical Expert Panels for the NS-CSHCN and NSCH provided final guidance

and approval in the design and implementation of methods used to measure medical home

described in this manual.

Christina Bethell and Debra Read led the development of this manual with support from

Deborah Rosenburg from the University of Illinois, Chicago as well as numerous CAHMI staff.

Measuring Medical Home Using Data Elements from the NS-CSHCN or the NSCH

INTRODUCTION

Currently, there are two national population-based surveys available that offer the

opportunity to document the number and proportion of children in the United States meeting a

multi-dimensional definition of Medical Home. These surveys-- National Survey of Children

with Special Health Care Needs (NS-CSHCN)5, 6 and the National Survey of Children’s Health

(NSCH)7 --are both sponsored by the Maternal and Child Health Bureau of the Health Resources

and Services Administration (HRSA/MCHB). The National Center for Health Statistics of the

Centers for Disease Control and Prevention (CDC/NCHS) is responsible for survey

administration and data collection. A substantial body of prior research contributed to the

specific approaches each survey uses to assess whether a child’s health care meets Medical

Home criteria.1-3 The purpose of this manual is to:

1. Provide a brief history of the medical home concept for children and youth

2. Document and compare the specific survey items from each year of administration of

the NS-CSHCN and NSCH, discussing the implications of question design and

placement when assessing the medical home concept

3. Document the analytic methods used to create the various sub-component scores and

medical home composite measures from each of these surveys

4. Compare and contrast the medical home results obtained by the different approaches

and discuss relative strengths and limitations of each

5. Identify other issues and measurement options for consideration in future work to

define approaches to assessing the population-based presence of medical home using

parent-reported data from national surveys on children’s health

The two national surveys described in this manual assess whether or not children have a

medical home according to the survey respondent, almost always the child’s parent. Different,

though related, methodological issues are posed to compare these parent-reported methods with

those that assess “medical home-ness,” using responses from provider surveys or through an

internal or external evaluation of medical practices, such as used in the Medical Home Index

measurement system.4

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I. BRIEF HISTORY OF THE MEDICAL HOME CONCEPT

The American Academy of Pediatrics (AAP) first proposed the medical home concept in

a policy statement published in 1992 followed by an updated statement in 2002.8,9 In the 2002

update, the AAP definition further specified the seven major components of care comprising the

medical home. Table 1 presents the seven components and 37 corresponding characteristics of

medical home as defined by the AAP, the vast majority of which require or are appropriate to

measure using parent-reported data.9

According to the AAP, the components of medical home should be delivered and

managed by a well-trained physician who is able to establish a partnership of mutual trust and

responsibility with the family and child. The AAP statements emphasize that a medical home is

“not a building, house, or hospital, but rather an approach to providing continuous and

comprehensive primary pediatric care from infancy through young adulthood, with availability

24 hours a day, 7 days a week, from a pediatrician or physician whom families trust.”8,9

In response to the work of the AAP, increasing children’s access to care delivered under

the medical home model has been identified as a priority for child health policy at the national

and local levels. The U.S. Department of Health and Human Services’ Healthy People 2010

goals and objectives state that “all children with special health care needs will receive regular

ongoing comprehensive care within a medical home” and multiple federal programs require that

all children have access to an ongoing source of health care.10,15 By 1997, sentiment in the field

for the AAP medical home model gained enough momentum for the federal Maternal and Child

Health Bureau to include the concept as one of the 18 national performance measures established

for the state Title V programs it administers:

3) The percent of Children with Special Health Care Needs (CSHCN) in the State who have a “medical/health home.” 11

From 1997 to 2003, this was the wording of the medical home performance measure in the Title

V Block Grant Guidance used by the states to submit their Annual Report and Application.

The incorporation of this performance measure into the Title V reporting system

preceded the availability of adequate data sources and valid, reliable methods for assessing this

model of care. In response to these needs, the Maternal and Child Health Bureau included

variables pertaining to the medical home in both the National Survey of Children with Special

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Health Care Needs (NS-CSHCN) and the National Survey of Children’s Health (NSCH). At the

same time, the Bureau supported the development of analytical approaches for summarizing

these variables into overall measures of the medical home.1-3

After launching the 2001 NS-CSHCN, the Maternal and Child Health Bureau modified

the medical home performance measure by explicitly pointing states to the NS-CSHCN as the

data source for Title V reporting requirement. Since 2003, the performance measure reads:

3) The percent of Children with Special Health Care Needs age 0 – 18 who receive coordinated, ongoing, comprehensive care within a medical home. (CSHCN Survey).11

All 50 states and the District of Columbia are required to report on this performance measure

annually in the Title V Block Grant Application and Annual Report.


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TABLE 1. Desirable Characteristics of a Medical Home – AAP 2002 Policy Statement

Accessible 1. Care is provided in the child or youth’s community. 2. All insurance, including Medicaid, is accepted. 3. Changes in insurance are accommodated. 4. Practice is accessible by public transportation, where available. 5. Families or youth are able to speak directly to the physician when needed. 6. The practice is physically accessible and meets Americans With Disabilities Act10 requirements.

Family-centered 7. The medical home physician is known to the child or youth and family. 8. Mutual responsibility and trust exists between the patient and family and the medical home physician. 9. The family is recognized as the principal caregiver and center of strength and support for child. 10. Clear, unbiased, and complete information and options are shared on an ongoing basis with the family. 11. Families and youth are supported to play a central role in care coordination. 12. Families, youth, and physicians share responsibility in decision making. 13. The family is recognized as the expert in their child’s care, and youth are recognized as the experts in their own care.

Continuous 14. The same primary pediatric health care professionals are available from infancy through adolescence and young adulthood. 15. Assistance with transitions, in the form of developmentally appropriate health assessments and counseling, is available to the child or youth and family. 16. The medical home physician participates to the fullest extent allowed in care and discharge planning when the child is hospitalized or care is provided at another facility or by another provider.

Comprehensive 17. Care is delivered or directed by a well-trained physician who is able to manage and facilitate essentially all aspects of care. 18. Ambulatory and inpatient care for ongoing and acute illnesses is ensured, 24 hours a day, 7 days a week, 52 weeks a year. 19. Preventive care is provided that includes immunizations, growth and development assessments, appropriate screenings, health care

supervision, and patient and parent counseling about health, safety, nutrition, parenting, and psychosocial issues. 20. Preventive, primary, and tertiary care needs are addressed. 21. The physician advocates for the child, youth, and family in obtaining comprehensive care and shares responsibility for the care that is

provided. 22. The child’s or youth’s and family’s medical, educational, developmental, psychosocial, and other service needs are identified and

addressed. 23. Information is made available about private insurance and public resources, including Supplemental Security Income, Medicaid, the State Children’s Health Insurance Program, waivers, early intervention programs, and Title V State Programs for Children with Special Health Care Needs. 24. Extra time for an office visit is scheduled for children with special health care needs, when indicated.

Coordinated 25. A plan of care is developed by the physician, child or youth, and family and is shared with other providers, agencies, and organizations involved with the care of the patient. 26. Care among multiple providers is coordinated through the medical home. 27. A central record or database containing all pertinent medical information, including hospitalizations and specialty care, is maintained at the practice. The record is accessible, but confidentiality is preserved. 28. The medical home physician shares information among the child or youth, family, and consultant and provides specific reason for referral to appropriate pediatric medical subspecialists, surgical specialists, and mental health/developmental professionals. 29. Families are linked to family support groups, parent-to-parent groups, and other family resources. 30. When a child or youth is referred for a consultation or additional care, the medical home physician assists the child, youth, and family in communicating clinical issues. 31. The medical home physician evaluates and interprets the consultant’s recommendations for the child or youth and family and, in

consultation with them and subspecialists, implements recommendations that are indicated and appropriate. 32. The plan of care is coordinated with educational and other community organizations to ensure that special health needs

of the individual child are addressed. Compassionate

33. Concern for the well-being of the child or youth and family is expressed and demonstrated in verbal and nonverbal interactions. 34. Efforts are made to understand and empathize with the feelings and perspectives of the family as well as the child or youth.

Culturally effective 35. The child’s or youth’s and family’s cultural background, including beliefs, rituals, and customs, are recognized, valued, respected, and

incorporated into the care plan. 36. All efforts are made to ensure that the child or youth and family understand the results of the medical encounter and the care plan, including the provision of (para) professional translators or interpreters, as needed. 37. Written materials are provided in the family’s primary language.

Source: American Academy of Pediatrics, Medical Home Initiatives for Children with Special Health Care Needs Project Advisory Committee. Policy statement: the medical home. Pediatrics. 2002;110:184-1


II. ASSESSMENT OF THE MEDICAL HOME CONCEPT

While the American Academy of Pediatrics’ (AAP) initial work in defining the medical

home provides a strong conceptual foundation, the measurement of this multi-layered concept is

a complex undertaking.12 As noted in the 2002 AAP policy statement: “Efforts to establish

medical homes for all children have encountered many challenges, including the existence of

multiple interpretations of the ‘medical home’ concept and the lack of adequate system supports

and structures to enable services to be provided by physicians according to the medical home

definition.”9 In spite of these challenges, the seven components and corresponding 37

characteristics of the AAP definition of the medical home remain the starting point for

operationalizing and assessing the concept through the National Survey of Children with Special

Health Care Needs and the National Survey of Children’s Health.

2.1 Overview of the Surveys

2001 NS-CSHCN: The National Survey of Children with Special Health Care Needs

(NS-CSHCN) was first implemented in 2001-2002. The survey collects data for children with an

ongoing health condition for which they require an above routine need or use of health care and

related services (CSHCN). It is designed to provide reliable prevalence estimates nationally and

separately for each state and the District of Columbia. Among the rich set of questions asked of

parents participating in this telephone survey are those specifically developed to enhance

information regarding states’ progress toward meeting the Title V performance measures for

CSHCN, including the presence of a medical home. At the time of the 2001 survey’s

development, a standardized method to measure medical home was not available. Working

closely with child health researchers on the national technical expert panel for the survey, the

development team drew upon research led by the Child and Adolescent Health Measurement

Initiative (CAHMI). This project was funded by the David and Lucile Packard Foundation in

order to develop and test what became the first Consumer Assessment of Health Providers and

Systems Survey for Children with Chronic Conditions (CAHPS-CCC) included in the National

Committee on Quality Assurance’s HEDIS.3 Based on this and other measurement tools, a core

set of questions with potential for assessing concepts outlined in the AAP’s definition of medical

home were identified and/or developed and tested for use in the NS-CSHCN. In May 2004,

standardized estimates of medical home prevalence for the population of CSHCN in each state

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and nationally were reported for the first time using data collected through the 2001 NS-

CSHCN.13.14 This manual describes the methods used to create those estimates.

2003 NSCH: The first National Survey of Children’s Health (NSCH) was conducted in

2003, two years after the initial implementation of the NS-CSHCN. This survey also includes

data elements for assessing the medical home. The sample for the NSCH is taken from the U.S.

population of non-institutionalized children age 0-17 years, rather than only CSHCN. The

NSCH’s focus on all children, not just children with special health care needs, presented

additional challenges for medical home measurement because the health care needs of these two

populations are quite different. Researchers from the Child and Adolescent Health Measurement

Initiative (CAHMI) and National Center for Health Statistics worked in conjunction with

Maternal and Child Health Bureau and its Technical Expert Panel to specify a medical home

measurement approach that built upon what was learned from the 2001 NS-CSHCN.2 A draft

set of questions were developed and included in the pretest for the 2003 NSCH. Results from the

pretest were analyzed and used to identify the final set of questions fielded in the medical home

section of the 2003 survey.2 The 2003 NSCH assesses the same components of the AAP medical

home definition as evaluated by the NS-CSHCN; however, the anchoring of the assessment and

the specific aspects of care assessed within each definitional component differ in important ways.

These differences and similarities are discussed in later sections of this manual.

2005/06 NS-CSHCN: The second administration of the National Survey of Children with

Special Health Care Needs (NS-CSHCN) took place during 2005-2006, providing yet another

opportunity to refine medical home measurement. The national technical expert panel evaluated

the methods used in the 2001 version of the NS-CSHCN and made several changes to the

medical home questions for the 2005/06 administration of the survey. The effective care

coordination and access to needed referrals topics underwent the most substantial revisions.

These changes are described in greater detail in later sections. The 2009/2010 NS-CSHCN is

currently being administered and uses the same survey items to measure Medical Home as in the

2005/06 NS-CSHCN.

2007 NSCH: Prior to the second administration of the NSCH in 2007, MCHB’s national

Technical Expert Panel (TEP) once again reviewed the methods and content used in the 2003

survey. On the basis of this evaluation, the TEP recommended a set of revisions that would

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bring the medical home content and assessment approach for the 2007 NSCH in line with that

used by the 2005/06 NS-CSHCN. This alignment of methodologies also responded to State

MCH leaders’ request for medical home estimates for their CSHCN populations at intervals

more frequent than the NS-CSHCN’s four-year cycle. Table 4 provides a crosswalk comparing

the medical home questions from the 2007 NSCH with those used by the 2005/06 NS-CSHCN.

The replication of 2005/06 NS-CSHCN medical home content and question design in the 2007

NSCH allows the same scoring parameters to be applied to both surveys – leading to directly

comparable medical home results for the CSHCN population on a biennial basis. However, they

differ in important ways that are further described below.


2.2 Overview of Methods and Content Used to Assess Medical Home

Table 2 provides an overview of the sampling, assessment focus, and number of survey

items used to measure components of the medical home concept in the NS-CSHCN and the

NSCH. Both surveys assess the same components of the AAP medical home definition;

however, they vary in the number of questions devoted to specific topics. The surveys also differ

with regard to the specific aspects of care assessed within each definitional component (see

Table 4). Due to methodological issues related to defining, documenting and interpreting

continuity of care, neither survey measures this concept directly. For similar reasons of

complexity and validity using a consumer-reported methodology, neither assess the physical and

financial accessibility of the medical home practice as characterized by the AAP definition.††

TABLE 2: Overview of medical home measurement in two national child health surveys

NS-CSHCN 2001

NS-CSHCN 2005/06

NSCH 2003

NSCH 2007

Total sample Per State sample

38,866 ≈ 750

40,723 ≈ 800

102,353 ≈ 2,000

91,432 ≈ 1,800

Population addressed CSHCN only 0-17 yrs

CSHCN only 0-17 yrs

All children† 0-17 yrs

All children† 0-17 yrs

Focus of assessment All child’s doctors and other health

providers

All child’s doctors and other health

providers

Child’s personal doctor or nurse

All child’s doctors and other health

providers

Number of survey questions addressing topics within AAP medical home definitional component:

Established relationship with a specific health care provider 1 1 1 1

ACCESSIBLE†† The concept of “accessible” is addressed in under “comprehensive” and “coordinated” care.

FAMILY-CENTERED 4 4 2 4

CONTINUOUS 0 0 0 0

COMPREHENSIVE 6 7 9 4

COORDINATED 5 6 2 6

COMPASSIONATE The concept of “compassionate care” is addressed in the context of the family-centered care questions asked in each of the surveys.

CULTURALLY EFFECTIVE 1 3 2 3 Total 17 21 16 18

† The CSHCN Screener included in the NSCH allows stratification of results for children with and without special health care needs

†† The Accessible component of the AAP definition encompasses the physical and financial accessibility of the medical home, including handicap accessibility, community level availability of care, accessibility by public transportation, acceptance of Medicaid or other insurance types. Topics related to timely access to needed care or services are addressed under the Comprehensive component of the definition.

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Table 3 briefly summarizes the questions used in each survey to address the various

components of medical home, highlighting relevant differences in content, wording, anchoring,

and skip patterns. In addition, Table 3 describes the criteria used to determine which respondents

are asked the questions related to having a medical home. In the NS-CSHCN and in the 2007

NSCH, parents of sampled children have the opportunity to answer all relevant medical home

questions. By contrast, only those respondents in the 2003 NSCH reporting that the child has a

personal doctor or nurse are asked the subsequent questions relating to the medical home. This

variation represents the most important substantive difference across the surveys.


TABLE 3: Across surveys comparison of methods and content for assessing medical home

2001 and 2005/06 NS-CSHCN; 2007 NSCH

2003 NSCH

Established relationship with a specific health care provider

‐ 2001 asks if child has a relationship with a single provider, not one or more providers

‐ 2005/06 and 2007 use the same wording as 2003 NSCH question asking about one or more providers

‐ Question asks parents if there is one or more health providers who function as child’s “personal doctor or nurse”

ACCESSIBLE The Accessible component of the AAP definition addresses the physical and financial accessibility of the medical home practice, including the accessibility of medical home practices by persons with disabilities, community-level availability of care, accessibility by public transportation, and acceptance of Medicaid and other types of insurance. Neither survey asks about these topics.

Topics related to the availability and timely access of needed care and services are included under the Comprehensive component of the AAP definition.

FAMILY-CENTERED

‐ Family-centered care questions ask about care from all child’s doctors and other health providers

‐ In 2001 and 2005/06, these questions are only asked for sampled children with 1 or more doctor visits during past 12 months

‐ In 2007, these questions are asked only for sampled children who used one or more of the following services during the past 12 months: preventive medical care, preventive dental care, mental health care, needed or received care from specialist doctors

‐ Family-centered care questions focus only on care from child’s personal doctor or nurse (PDN)

‐ Family-centered care questions are asked only for sampled children with one or more PDNs

CONTINUOUS Topics within this component are not assessed by either survey due the methodological difficulties of measuring continuity of care over time in a reliable way using cross-sectional, point in time data.

COMPREHENSIVE ‐ 2001 and 2005/06 questions ask whether child has usual sources of care for both sick and preventive care.

‐ 2007 asks only about usual source for sick care

‐ Asked for all children in sample

‐ Asks about access to urgent care and phone advice from PDN; access to needed specialist care and services; and receipt of preventive care during past year

‐ Access questions asked only for sampled children with PDNs; preventive care visits asked for all children in sample

COORDINATED ‐ Questions about receipt of needed help and satisfaction with communication among all child’s doctors, other providers, schools, and other programs

‐ Substantial changes made in 2005/06 to 2001 question content and skip patterns

‐ 2007 uses same questions as 2005/06

‐ Questions focus on follow up from personal doctor or nurse after child receives needed specialist care, services, or equipment.

‐ Asked only for children with PDNs

COMPASSIONATE ‐ Compassionate care is addressed in the context of the family-centered care questions

‐ Compassionate care is addressed in the context of the family-centered care questions

CULTURALLY EFFECTIVE

‐ 2005/06 and 2007 have questions on access to language services during health care visits for children from households where primary language in not English

‐ 2001, 2005/06 and 2007ask about health care providers’ sensitivity to families’ values and customs

‐ Questions ask about access to language services during health care visits

‐ Asked only for children living in households where the primary language is not English

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2.3 Differences in Methods and Content Used to Assess Medical Home Table 4 provides the abbreviated wording and corresponding survey instrument

numbering for the questions from each survey used to assess specific topics within each

definitional component of medical home. This information allows readers to compare and

contrast the content used to assess medical home in each of the surveys. Highlights include the

presence or absence of specific questions, variation in the number of questions used to address

topics within each component of medical home, nuances in question wording across the NS-

CSHCN survey years, and the presence or absence of skip patterns for identifying qualifying

(“legitimate”) responders. Of particular importance are differences across the surveys in terms of

the assessment focus and the recall timeframes specified for respondents. These factors, in turn,

influence the content and wording of questions used to assess the medical home concept. These

differences and related measurement considerations are discussed in more detail below.

Differences in focus of assessment: As shown in Table 4, both surveys focus closely on

health care providers’ contributions to the medical home model. Both the NS-CSHCN and 2007

NSCH take a broad approach by anchoring the medical home assessment to what might be

termed the “network of health care providers and settings” with which the child and family

interact. In contrast, medical home assessment in the 2003 NSCH focuses solely on care from the

child’s primary health care provider(s) described in the survey questions as the child’s “personal

doctor or nurse.” The question content, wording, and skip patterns used in each survey reflect

these different starting points for evaluating the medical home model.

Differences in wording and content: The focus of assessment directly influences the

wording and content of questions used to assess medical home. As seen in Table 4, the family-

centered care questions used in the NS-CSHCN and 2007 NSCH ask parents to consider

communication and partnership among “child’s doctors and other health providers” when

responding. In contrast, the 2003 NSCH asks about family-centered care only in terms of the

“child’s personal doctor or nurse.” The effect of the different anchoring approaches persists

across the surveys, determining to a large extent the selection and content of the questions used

to assess topics within each of the medical home definitional components, and ultimately, the

concept of “medical home-ness” overall. As a result, the 2001 and 2005/06 NS-CSHCN and

2003 NSCH share very few questions in common, despite the fact that both surveys address the

same five definitional components of AAP medical home model. On the other hand, the medical

home questions in the 2007 NSCH are the same ones used by the 2005/06 NS-CSHCN. Starting

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in 2007, the medical home prevalence measures from the NSCH and NS-CSHCN are based on

the same content and methodology to yield comparable estimates across years for both surveys.

Differences in recall timeframes: Recall timeframes have particular relevance for the

medical home model because the concept of duration is inherent throughout many of the AAP

definitional components. For instance, the concepts of care coordination and that of building

partnerships with families imply ongoing connectedness among children, their families, health

providers, and the health care delivery system. Capturing the duration of these relationships

using a cross-sectional survey is a challenge that can be addressed at least partially through

question design. The survey development team for both the NS-CSHCN and NSCH chose to

anchor the medical home assessment to the past 12 months, using question stems stating “During

the past 12 months did (child) need …” or “During the past 12 months, how often …” in order to

prompt a response that incorporates the respondents’ experiences over time. These question

stems are not used consistently across the two surveys. Referring again to the family-centered

care items in Table 4, notice that NS-CSHCN and 2007 NSCH questions begin with “During the

past 12 months….” The 2003 NSCH questions assessing the similar concepts ask “how often”

and do not include a specific timeframe. On the other hand, some of the coordinated care

questions in both surveys ask respondents to reflect on their children’s care over the past year;

others do not specify a timeframe.

Additional considerations when using survey-reported data: Within any given survey,

design considerations such as those mentioned above and others contribute to decisions about the

wording of question stems, the type of response categories used, whether to use the same

response categories for similar questions, and the use of skip pattern criteria to identify

qualifying (“legitimate”) responders for certain questions. Each of these decisions ultimately

influence the interpretation and application of the data collected. It is essential that researchers

seek out and understand the methodological considerations contributing to the selection and

design of specific questions in these surveys. Such understanding will help ensure these data are

analyzed and interpreted in a valid, effective manner for the purposes of surveillance and

monitoring, hypothesis testing, or policy development.

The survey year specific methodology reports for the NS-CSHCN and NSCH are

available for download from http://www.cdc.gov/nchs/slaits.htm . These reports offer a wealth of

detail regarding the study design, question testing and use history, sampling, and administration

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http://www.cdc.gov/nchs/slaits.htm


- 13 -

of these surveys. The reports also include information about the construction of the sampling

weights, survey strata and primary sampling unit variables, and edits made to confidential data

elements released in the public use files.

2.4 Full Text Copies of the Medical Home Questions

The full text of the medical home questions used in each survey, including response

categories and complete skip pattern directions, are found in Appendices A_1 through D_1. To

obtain copies of the Computer Assisted Telephone Interview (CATI) formatted survey

instruments, go to http://www.cdc.gov/nchs/slaits.htm and follow the survey-specific links.

Survey items and response options from the NS-CSHCN and the NSCH can also be obtained

from the Child and Adolescent Health Measurement Initiative’s Data Resource Center for Child

and Adolescent Health website (www.childhealthdata.org) by searching the interactive “Guide to

Topics and Questions Asked” located under the LEARN ABOUT THE SURVEY area for each

survey.


http://www.childhealthdata.org/


TABLE 4: Survey item numbers and brief description of questions used to assess the AAP definitional components of Medical Home, by survey Medical Home

components 2001 NS-CSHCN 2005/06 NS-CSHCN 2003 NSCH 2007 NSCH

Established relationship with a

specific provider

C4Q02A: Child has one health care provider considered to be personal doctor or nurse

C4Q02A: Child has one or more health care providers considered to be personal doctor or nurse

S5Q01: Child has one or more health care providers considered to be personal doctor or nurse (PDN)

K4Q04: Child has one or more health care providers considered to be personal doctor or nurse (PDN)

ACCESSIBLE (Not about asked in way defined via AAP definition of medical home)

(Not about asked in way defined via AAP definition of medical home)



FAMILY-CENTERED

During past 12 months, how often did all child’s doctors and other health providers:


How often does child’s PDN:


C6Q02:

C6Q03:

C6Q05:

C6Q06:

Spend enough time with child?

Listen carefully to parent?

Provide needed information?

Help parents feel like partner in child’s care?

C6Q02:

C6Q03:

C6Q05:

C6Q06:





S5Q04: Spend enough time with child?

S5Q02: Explain things in ways that child and parents understand?

K5Q40:

K5Q41:

K5Q43:

K5Q44:





CONTINUOUS (Not asked about in survey) (Not asked about in survey) (Not asked about in survey) (Not asked about in survey)

COMPREHENSIVE A) Referrals for specialist care During past 12 months:

A) Referrals for specialist care During past 12 months:

A) Access to urgent care or advice During past 12 months:

A) Referrals for specialist care During past 12 months:

C4Q05X02:

C4Q07:

Needed care from a specialty doctor? Any problem getting referrals to any specialist child needed to see?

C5Q11:

C4Q07:

Needed a referral to see any doctors or receive any services?

IF yes, any problems getting the referral that was needed?

S5Q06: S5Q06A:

S5Q07: S5Q07A:

Needed to call child’s PDN for help or advice? IF yes, got help from child’s PDN? Needed care right away from child’s PDN? IF yes, got care right away from child’s PDN?

K5Q10: K5Q11:

Needed a referral to see any doctors or receive any services? IF yes, any problems getting the referral that was needed?

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TABLE 4 (cont.)

Medical Home components 2001 NS-CSHCN 2005/06 NS-CSHCN 2003 NSCH 2007 NSCH

COMPREHENSIVE (cont.)

B) Usual sources for care B) Usual sources for care B) Access to specialty care During past 12 months:

B) Usual sources for care

C4Q0A: C4Q0B: C4Q01: C4Q02:

Is there a place child usually goes when he/she is sick? IF yes: What kind of place is it? Is this the same place that child goes for routine preventive care? IF no, where does child go for routine preventive care?

C4Q0A: C4Q0B:

C4Q0D:

C4Q01:

C4Q02:

Is there a place child usually goes when he/she is sick? IF yes: What kind of place is it?

Is there a place child usually goes for routine preventive care?

IF yes, Is this the same place that child goes for routine preventive care?

IF no, What kind of place does child go for routine preventive care?

S5Q09: S5Q09A: S5Q10: S5Q10A:

Needed specialist doctor care recommended by child’s PDN? IF yes, problems getting needed specialist care? Needed special services or equipment not available from PDN? IF yes, problems getting needed special health services or equipment?

K4Q01: K4Q02:

Is there a place child usually goes when he/she is sick? IF yes: What kind of place is it? Is it a doctor's office, emergency room, hospital outpatient department, clinic, or some other place?

C) Preventive care visit

S2Q03: Number of preventive care visits during past 12 months with any health provider

COORDINATED A) Professional care coordination During past 12 months:

A) Help with care coordination During past 12 months:

A) Follow up after specialty care During past 12 months:

A) Help with care coordination During past 12 months:

C4Q06X0A: C4Q06X0AA: C5Q02:

Child’s family needed professional care coordination? IF yes, received all professional care coordination needed? How often does a professional help coordinate child’s care?

C5Q12: C5Q17: C5Q09:

Does anyone help family to arrange or coordinate child’s care?

Did family need extra help arranging or coordinating child’s health care? IF yes, how often got as much help as needed arranging or coordinating child’s health care?

S5Q09C: S5Q10C:

How often did PDN follow up with parents after child visited a specialist? How often did PDN follow up with parents after child received special health services or equipment?

K5Q20: K5Q21: K5Q22:

Does anyone help family to arrange or coordinate child’s care?

Did family need extra help arranging or coordinating child’s health care? IF yes, how often got as much help as needed arranging or coordinating child’s health care?

B) Provider communication B) Provider communication B) Provider communication

C5Q05: C5Q06:

How well do all child’s doctors and other providers communicate with each other? How well do all child’s doctors and other providers communicate with school and other programs?

C5Q10:

C5Q05: C5Q06:

How satisfied with communication between child’s doctors and other providers?

Needed doctors or other providers to communicate with child’s school or other programs? IF yes, how satisfied with that communication?

K5Q30: K5Q31: K5Q32:

How satisfied with communication between child’s doctors and other providers? Needed doctors or other providers to communicate with child’s school or other programs? IF yes, how satisfied with that communication?

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TABLE 4 (cont.)

Medical Home components 2001 NS-CSHCN 2005/06 NS-CSHCN 2003 NSCH 2007 NSCH

COMPASSIONATE (This concept is addressed by the Family-centered Care component questions)

(Addressed in the Family-centered Care component questions)




A) Respect for diversity During past 12 months, how often were child’s doctors and other health providers:



C6Q04: Sensitive to family’s values and customs?

C6Q04: Sensitive to family’s values and customs?

K5Q42: Sensitive to family’s values and customs?

B) Language services B) Language services B) Language services

During past 12 months: During past 12 months: During past 12 months:

S5Q13:

S5Q13A:

Needed an interpreter to help speak with child’s doctors or nurses?

IF yes, how often able to get someone other than a family member to help speak with child’s doctors or nurses?

S5Q13:

S5Q13A:



K5Q45:

K5Q46:



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III. QUANTIFYING THE MEDICAL HOME CONCEPT

Adequately measuring whether and to what extent children have a medical home involves

capturing the relationships within and across various components and characteristics of this

complex concept. Such an endeavor presents a unique set of analytic challenges which are

further compounded by the opportunities and constraints characteristic of survey data in general,

and the NS-CSHCN and NSCH in particular.

3.1 General analytic considerations

Data availability: The type and content of available data elements influence the

construction and interpretation of any medical home composite measure that might be computed.

Feasibility and methodological constraints often limit the number and type of questions included

in a survey. Under ideal circumstances, survey researchers would field a lengthy, comprehensive

set of questions which attempt to operationalize the AAP definition in great detail. In practice,

survey administration costs, time limits, and respondent burden oblige survey designers to

address the most policy relevant concepts or those with the strongest evidence base. In the NS-

CSHCN and NSCH, only a subset of the characteristics or topics specified under each

component of the AAP medical home definition are addressed. As described in Table 3, neither

the NS-CSHCN nor NSCH surveys include questions about the physical and financial

accessibility component of AAP medical home definition. The characteristics of compassionate

care are measured indirectly through the questions used to address topics within of the Family-

centered definitional component.

Another common reason for gaps in survey content is a lack of reliable methods for

measuring particular concepts. For example, the continuity of care component of the AAP

medial home definition is not amendable to assessment using cross-sectional, point in time

surveys. Neither survey asks if the child has a care plan in place or whether the child’s doctors

and other providers maintain a centralized electronic record with all pertinent medical

information – both of which are identified by the AAP definition as characteristics of care within

the Coordinated Care component. While relevant to the effective delivery of care coordination,

reliable methods for eliciting parental report on these topics are not currently available.

Additional development work is needed before these and other characteristics of the medical

home model are able to be reliably assessed in the context of parent respondent surveys.

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Identifying valid denominators: The vast majority of children seldom, if ever, require

services beyond basic preventive and acute care. It is a different story for children with special

health care needs who experience chronic health conditions for which they require above routine

health care and related services. The scope and intensity of health care services required by this

group far exceeds that for children in general. At the survey measurement level, the differential

need for services within the child population makes it necessary to employ filter questions and

skip patterns to identify children who actually need or experience the various types of care so

that respondents can legitimately answer the questions asked. For this reason, developing a

composite measure of medical home from such data requires methods that distinguish, at both

the data collection and analytic levels, children who do and do not need the specific types of care

being assessed in order to specify valid denominators for measurement.

Minimum criteria for having a medical home: As described earlier, the NS-CHSCN and

the 2007 NSCH assess medical home from the perspective of a network of services and care

delivered by multiple providers across a variety of settings, whereas the 2003 NSCH anchors all

of its medical home questions to care received from or managed by the child’s personal doctor or

nurse. These two perspectives on the medical home have been debated in the field, and the

evolution of thinking spurred by that debate is reflected in the revisions to questions and

approaches used in each subsequent survey. Although both starting point perspectives are

reasonable, each translates into conceptual differences regarding the baseline criteria used to

develop a composite score for care reflecting the spirit of the medical home model.

The NS-CSHCN and 2007 NSCH baseline medical home criteria call for children to have

at least one personal doctor/nurse AND usual sources for health care. In contrast, 2003 NSCH

minimum medical home criteria require children to have a personal doctor or nurse who also

consistently communicates well AND at least one preventive medical care visit in the past 12

months. Figure 1 illustrates the different criteria for having a medical home used by each survey.


Figure 1:

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3.2 Overview of the “On Every” Scoring Approach

Given the general analytic considerations discussed above, members of the survey design

team for the NS-CSHCN and NSCH considered several approaches for summarizing the data

elements in the two surveys into overall composite measures of the medical home concept.

Previous research using other surveys identified several options for creating medical home scores

from parent-reported data.3 One of these options, termed the “on every” method, was selected by

MCHB for use with the NS-CSHCN and NSCH medical home data.

The “on every” method uses the results from the various sub-component topics assessed

within the components of the AAP medical home definition to construct an overall composite

measure. Some of the sub-component topics do not apply to all children. For example, not all

children need referrals in order to see other doctors or obtain services so it does not make sense

to ask the parents of these children whether problems occurred in getting referrals. In such cases,

question responses are used to identify children who did not need a specific type of care and thus

there is a legitimate reason for their parents not being asked about that topic. To qualify as

having a medical home, a child must either receive care that meets the threshold criteria or

qualify as not needing such care on EVERY sub-component topic assessed. Constructing the

overall composite measure using the “on every” method entails the following steps:

STEP 1: From the set of questions pertaining to a specific sub-component topic, identify the children who needed care and those who are legitimate skips because care was not needed.

STEP 2: Identify responses meeting threshold criteria for care according to the specific scoring parameters for each sub-component topic. Depending upon the number of questions involved, this step may include developing several interim variables to be further aggregated in Step 3.

STEP 3: Use the results from Step 2 to create a summary variable for each sub-component topic by categorizing children into one of 3 mutually exclusive groups:

a) Care meets the threshold criteria for sub-component topic b) Care does not meet the threshold criteria for sub-component topic c) Legitimate skip because child did not need the type of care addressed

by sub-component topic during the time frame being assessed

STEP 4: Use results from Step 3 to construct the overall composite measure of medical home. To be classified as having a medical home according to the “on every” method, a child must meet the threshold criteria or qualify as not needing care (legitimate skip) on EVERY sub-component topic assessed by the survey.

- 20 -


For example, suppose a child qualifies as needing care covered by three of five different

sub-components topics assessed in a particular survey. In order to classify as having a medical

home, the child’s care must meet the threshold criteria for every one of these three sub-

components topics PLUS have responses indicating that he or she did not need the types of care

addressed by the remaining two sub-components topics. It is important to note that the medical

home concepts measured in the NS-CSHCN and NSCH represent the minimal criteria for having

a medical home. In addition, consumer surveys tend to yield optimistic reports of experiences of

care on survey items such as those used to assess medical home in the NS-CSHCN and NSCH.

These two issue (minimum set asked and positivity bias of surveys) supported the use of an “on

every” scoring approach.

Survey specific considerations: The “on every” approach is used to construct the overall

medical home composite measures derived from both the NS-CSHCN and the NSCH surveys.

The parameters used to develop the sub-component topic scores, however, are specific to each

survey because of differences in the structure of the data elements, types of questions, and

number of sub-component topics. Sections 3.3 through 3.5 describe the sub-component topic

scoring parameters for each of the surveys. These sections also include examples based on six

hypothetical cases illustrating how the “on-every” scoring algorithm is applied to different

patterns of sub-component topic results from each survey to create the overall medical home

composite measures.

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- 22 -

3.3 Medical home measurement using NS-CSHCN data elements

The overall medical home measure from the NS-CSHCN is a composite of five different

sub-component topics assessing the following:

1. Child has at least one personal doctor or nurse

2. Family-centered care

3. Getting needed referrals

4. Usual source(s) for both sick and well care

5. Effective care coordination

Table 5 organizes the five medical home topics assessed by the NS-CSHCN according to the

specific definitional components of the AAP medical home model each is designed to measure.

The number of NS-CSHCN survey items used to derive each of the sub-component topic

variables varies from one to seven (see Table 2). In the 2001 survey, a total of 17 questions are

used to develop the medical home composite measure. Subsequent revisions led to a total of 21

items from the 2005/06 NS-CSHCN used in measuring the medical home concept.

Sub-component topic denominators: Two of the NS-CSHCN sub-component topics are

relevant for all children in the sample; the content of the remaining topics pertain only to the

children who needed the type of care being addressed. Children with survey responses indicating

a specific type of care was not needed are designated as “legitimate skips” because their parents

cannot legitimately answer questions about care their children did not receive. The relevant

subsets of children (i.e., denominators) for the five sub-component topics assessed in the NS-

CSHCN are as follows:

1. Two sub-component topics (Have at least one personal doctor or nurse; Usual

sources for both sick and well care) include all children in the sample.

2. One sub-component topic (Family-centered care) includes only those children with

one or more doctor visits during the past 12 months. All other children are considered

“legitimate skips” for scoring purposes.

3. Two sub-component topics (No problems obtaining referrals; Effective care

coordination) pertain only to children who needed these types of services during the

past 12 months. Children with survey responses indicating the relevant services were

not needed or (as in the case of the care coordination questions for the 2005/06

survey) not used by the child are considered “legitimate skips” for scoring purposes.


Sub-component topic thresholds and legitimate skips: Table 5 summarizes the threshold

and legitimate skip criteria for each of the NS-CSHCN sub-component topics. The SAS and

SPSS scoring programs provided in Appendices A_1 through B_2 create the five derived

variables listed in the second column of the table – one for each of the sub-component topics

used to construct a medical home composite measure from the NS-CSHCN data elements.

Table 5: Measuring Medical Home using NS-CSHCN data elements: Sub-component topic variables Sub-component topics measured within each AAP Medical Home definitional component

Variable name* Threshold criteria Legitimate skip criteria

RELATIONSHIP WITH SPECIFIC PROVIDER 1. Has at least one

“personal doctor or nurse”

PERSDOC

“Yes” to question about having a personal doctor or nurse

No skips; asked for all sample children

ACCESSIBLE -- -- --

FAMILY-CENTERED 2. Receives family-

centered care

FAMCENT

Responses of “Usually or Always” to all questions assessing family-centered and culturally effective care

Responses indicating child did not visit a doctor during past 12 months

CONTINUOUS -- -- --

COMPREHENSIVE 3. Getting needed referrals

NOREFPRB

“No problem” response to question about obtaining needed referrals

Responses indicating child did not need referrals (2005/06) or did not need specialist care (2001) during past 12 months


USUALSW Responses indicating child has regular sources of care other than hospital emergency room for both sick and well care


COORDINATED 5. Getting effective care

coordination when needed

CARECOOR

Responses indicating getting all desired help with care coordination, and if needed, responses of “Very satisfied” (2005/06) or “Excellent” (2001) to questions about providers’ communication with each other and with school/other programs.

Responses indicating no need for professional help with care coordination (2001) In 2005/06, the care coordination questions are only asked for children who used 2 or more services during the past year. Children who used less than 2 services and those whose family members do not report getting or wanting extra help to coordinate child’s care are considered legitimate skips.

COMPASSIONATE Assessed by questions within the Family-centered Care component


Responses to questions addressing culturally effective care included in the Family-centered Care sub-component topic scoring

-- Not assessed by survey (See Table 2 for details) *2005/06 SAS variable names shown in the table; see Appendices for SPSS variable names

- 23 -


Scoring sub-component topics: As discussed in previous sections, a number of changes

and additions were made to the medical home questions used for the 2005/06 NS-CSHCN. Some

of these changes resulted in significant revisions in the threshold criteria and valid denominators

for the sub-component topics – especially those addressing getting needed referrals and effective

care coordination. The scoring parameters for the 2001 and 2005/06 versions of the sub-

component topics described earlier in Table 5 are briefly outlined below – including any

implications associated with revisions to the medical home questions used in the 2005/06 NS-

CSHCN:


a. Constructed from a single item

b. Threshold criteria = YES responses indicating child has one or more than one personal doctor or nurse

c. Minor wording changes in 2005/06 resulted in an additional response option for children with 2 or more personal doctors or nurses; no changes to scoring

2. Receives family-centered care

a. Constructed from five items in 2001; seven items in 2005/06

b. In 2005/06, two new questions about access to interpreter services, when needed, during child’s health care visits were added and incorporated into the family-centered care topic score ; the new questions are only asked for children living in households with primary languages other than English

c. Wording of the five family-centered care questions remained the same across survey years; no changes

d. 2001 threshold criteria = responses indicating child had 1 or more doctor visits during past 12 months AND responses of USUALLY or ALWAYS to all five family-centered care questions

e. 2005/06 threshold criteria = responses indicating child had 1 or more doctor visits during past 12 months AND responses of USUALLY or ALWAYS to all five family-centered care questions, AND if needed, responses of USUALLY or ALWAYS to accessing interpreter services during child’s health care visits

3. No problems obtaining referrals

a. Constructed from 2 items

b. Significant changes in question wording and methods in 2005/06

c. 2001 threshold criteria = YES response to child needing care from a specialist doctor during past 12 months AND response of NOT A PROBLEM to obtaining a referral to see a specialist

- 24 -


d. 2005/06 threshold criteria = YES response to referrals are necessary in order for child to see other doctors or receive services AND response of NOT A PROBLEM to getting the needed referrals

e. IMPORTANT NOTE: In 2001 the valid denominator for “no problems obtaining referrals” sub-component topic are children who needed to see a specialist during the past 12 months (about 50% of CSHCN); in 2005/06 the valid denominator for the sub-component topic changed to children who need to obtain a referral in order to see other doctors or receive services (about 33% of CSHCN).


a. Constructed from four items in 2001; five items in 2005/06

b. Minor changes in wording and skip patterns in 2005/06 survey to improve question flow; no changes in scoring

c. Threshold criteria = responses across the relevant questions indicating child has regular sources other than hospital emergency room for both sick and well care

5. Receives effective care coordination

a. Constructed from five items in 2001; six items in 2005/06

b. Significant changes to question wording and methods in 2005/06

c. 2001 threshold criteria = YES responses to needed AND received professional help with care coordination during past 12 months, AND if needed, responses indicating EXCELLENT communication between child’s doctors and/or between child’s doctors and school or other programs.

d. 2005/06 threshold criteria = If child used 2 or more services during past year, affirmative responses indicating (a) family currently receives help coordinating child’s care and does not need extra help, OR if extra help was needed, family USUALLY received the help desired; OR (b) no help coordinating care was reported AND no wanted extra help coordinating care was reported; AND (c) if child used any of five different specialized services and communication between doctors was needed, responses of VERY SATISFIED with that communication, AND (d) if needed, responses of VERY SATISFIED with communication between doctors and child’s school or other programs.

e. IMPORTANT NOTE: In 2001, the valid denominator for the care coordination sub-component topic are children whose family members needed professional help with care coordination during the past year (about 12% of CSHCN met the 2001 inclusion criteria)

f. IMPORTANT NOTE: In 2005/06, valid denominator for the care coordination topic changed to children who used two or more of the services asked about in the NS-CSHCN during past year.

Additional information such as the survey-specific item numbers, exact text of the medical home

questions, and details of the interim variables developed to construct each sub-component topic

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score is included with the user resources for the NS-CSHCN provided in Appendices A_1

through B_2.

NS-CSHCN medical home composite measure: The SPSS and SAS scoring programs in

Appendices A_1 through B_2 use the ‘on every’ method (see section 3.2) to construct

dichotomous composite measures that classify children as either having or not having a medical

home. To qualify as having a medical home as measured in the NS-CSHCN, children must:

A) Meet both NS-CSHCN baseline criteria for having a medical home (Fig. 1)

B) AND, either receive care meeting the threshold criteria or qualify as a legitimate skip on each of the three additional sub-components topics.

Figure 2 below presents six hypothetical cases – each illustrating how different

combinations of sub-component topic results culminate in the final medical home outcome using

the “on every” approach to construct the composite measure. For brevity, the variable names

shown in Table 5 are used in Figure 2 to denote each of the five sub-component topics. The

details of these derived variables are described in Table 5 and in Appendices A_1 through B_2.

Figure 2: National Survey of CSHCN, 2001 and 2005/06

Scoring algorithm examples for the NS-CSHCN Medical Home composite measure

Does child meet threshold criteria?

Derived variable names for the NS-CSHCN sub-component topics (see Table 5)

Child #1

Child #2

Child #3

Child #4

Child #5

Child #6

“Baseline criteria for having a medical home”

PERSDOC Yes~ Yes Yes No Yes Yes

USUALSW Yes Yes Yes Yes Yes Yes

FAMCENT Yes Yes X Yes Yes --

NOREFPRB Yes X X Yes No Yes

CARECOOR Yes X X Yes Yes Yes

Qualifies as having a Medical Home? YES YES YES NO NO --*

X = Legitimate skip – child did not need the type of care addressed by this topic -- = System missing or “Don’t know/Refused” responses to 1 or more questions used to derive the sub-component topic variable * = Children with missing or “Don’t know/Refused” responses for 1 or more sub-component topics variables are NOT included in the

valid denominator when calculating the overall medical home composite score

- 26 -


As illustrated in Figure 2, the minimum NS-CSHCN criteria for having a medical home

requires children to have a personal doctor/nurse AND usual sources for both sick and preventive

care. In addition to meeting these baseline criteria, children also must receive care meeting the

threshold criteria OR qualify as a “legitimate skip” on each of three additional sub-components

topics measured in the survey (Figure 2, child #1 through child #3). Failing to meet even one of

two baseline criterion automatically categorizes a child as not having a medical home, regardless

of whether he or she receives care meeting the thresholds for all other sub-component topics

(Figure 2, child #4). On the other hand, children meeting the two baseline criterion qualify as

having a medical home, even if they did not need any of the other types of care assessed by the

three remaining sub-component topics (Figure 2, child #3).

Conversely, if a child meets the baseline criteria for having a medical home and received

care that did not meet the threshold for one or more sub-component topics, the result is “no

medical home” (Figure 2, child #5). Finally, the NS-CSHCN medical home scoring programs

provided in the appendices do not include in the valid denominator for calculating the medical

home measure any cases with responses classified as “Don’t Know/Refused” or system missing

to any subcomponent topic variable (Figure 2, child #6). Nationally, about 5 percent of children

in the sample were not included in valid denominators for the medical home composite measures

from the 2001 and 2005/06 NS-CSHCN surveys.

Although the revisions to the 2005/06 NS-CSHCN medical home questions resulted in

changes to the parameters used to derive several of the sub-component topic variables, the “on

every” scoring algorithm for creating the overall medical home composite measure remains the

same for both administrations of the NS-CSHCN.

Resources for measuring medical home using NS-CSHCN data: Appendices A_1

through B_2 offer a set of resources to guide SAS and SPSS users in constructing the sub-

component topic variables and composite medical home measure using data elements from the

2001 or 2005/06 NS-CSHCN. These resources include:

• Overview tables with derived variable names from SAS and SPSS medical home

scoring programs and associated NS-CSHCN data elements

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• SAS and SPSS programming code for creating the overall medical home composite

measure, each of the various sub-component topic scores and associated interim

variables from 2001 or 2005/06 NS-CSHCN

• Summary tables showing aggregate data results for the Medical Home composite

measure, sub-component topics and associated interim variables using 2001 or

2005/06 NS-CSHCN data elements

• Tables with the text, response options and associated skip pattern details for each of

the survey items from the 2001 or 2005/06 NS-CSHCN used in the SAS and SPSS

medical home scoring programs

• Unweighted univariate distributions for the dichotomous medical home composite

measure, each of the sub-component topic variables and associated interim variables

produced by the SAS or SPSS program code for constructing medical home measures

from the 2001 or 2005/06 NS-CSHCN

Another resource includes the NS-CSHCN indicator codebooks available through the Data

Resource Center for Child and Adolescent Health website: www.childhealthdata.org

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3.4 Measuring medical home using 2003 NSCH data elements

The overall medical home measure from the 2003 NSCH is a composite of six different


1. Child has at least one “personal doctor or nurse” (PDN)

2. Preventive care visits during past 12 months

3. Family-centered care from PDN

4. Access to needed urgent care and/or phone advice from PDN

5. Access to needed specialist care and/or specialized services or equipment

6. PDN follow up after child sees specialist and/or gets specialized health services

Table 6 organizes the six medical home topics assessed in the 2003 NSCH according to the

specific definitional components of the AAP medical home model each is designed to measure.

The number of survey items used to construct the six 2003 NSCH sub-component topic variables

ranges from as few as one to as many as nine (see Table 2).

Sub-component denominators: All children in the 2003 NSCH sample are included in

the valid denominators for the personal doctor or nurse (PDN) and the preventive care visit sub-

component topics. The remaining medical home topics assessed in the 2003 survey apply only to

denominators of children with at least one PDN and need for the types of care addressed within a

topic. Children without any PDN and those who have a PDN but did not need the specific types

of care being assessed are not included in the valid denominators for these sub-component

topics. Rather, these cases are designated as “legitimate skips” for scoring purposes because

there is no reason to ask parents questions about care children did not need. The valid

denominators for the six medical home sub-component scores derived from 2003 NSCH are as

follows:

1. Two sub-component topics (At least one personal doctor or nurse; Preventive care

visit during past 12 months) include all children in the sample in the denominators.

2. One sub-component topic (Family-centered care from PDN) includes only children

who have at least one PDN in valid denominator. Children who do not have any PDN

are considered “legitimate skips” for scoring purposes.

3. Three sub-component scores (Access to urgent care/phone advice from PDN; Access

to needed specialist care/services; Follow up by PDN after child gets specialist care

and/or specialized services) pertain only to children who have PDNs and needed the

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specific types of care addressed by each sub-component topic. Children without any

PDN and those who have a PDN but did not need the types of care pertaining to these

three sub-components topics are considered “legitimate skips” for scoring purposes.

Sub-component thresholds and legitimate skips: Table 6 summarizes the threshold and

legitimate skip criteria for each of the 2003 NSCH sub-component topics. The SAS and SPSS

scoring programs provided in Appendices C_1 and C_2, create the six derived variables listed in

the second column of the table – one for each of the sub-component topics used to construct the

2003 NSCH medical home composite measure.

Table 6: Measuring Medical Home using 2003 NSCH data elements: Sub-component topic variables Sub-component topics measured within each AAP Medical Home definitional component


RELATIONSHIP WITH SPECIFIC PROVIDER 1. Has at least one “personal

doctor or nurse” (PDN)

S5Q01

“Yes” to question about having a personal doctor or nurse


ACCESSIBLE -- -- --

FAMILY-CENTERED 2. Receives family-centered care from PDN

PDNCOM_2

Responses of “Usually or Always” (> 75pts) to questions on PDN listening and time spent with child

Responses indicating child does not have a personal doctor or nurse (PDN)

CONTINUOUS -- -- --

COMPREHENSIVE 3. Preventive care visit,

past 12 months

PC_2

One or more preventive medical care visits with any health care provider during past 12 months



CARE_2 Responses of “Usually or Always” ( > 75pts) for each type of care needed by child

Responses indicating child does not have PDN or has PDN but did not need these types of care during past 12 months

5. Access to needed specialist care and/or specialized services

ACC_2 Responses of “Small Problem or No Problem” ( > 75pts) accessing each type of care needed by child

Responses indicating child does not have PDN or has PDN but did not need specialized care or services during past 12 months

COORDINATED 6. Follow up by PDN after child

gets specialist care and/or specialized services

COOR_2 Responses of “Usually or Always” (score of > 75pts) for each type of care for which child needed follow up

Responses indicating child does not have PDN or has PDN but did not need specialized care or services during past 12 months


CULTURALLY EFFECTIVE Included in the Family-centered Care sub-component topic scoring -- Not assessed by survey (See Table 2 for details) *SAS variable names shown in the table; see Appendices for SPSS variable names

Scoring sub-component topics: Somewhat different methods are used to develop the

medical home sub-component topic variables derived from the 2003 NSCH and 2007 NSCH and


NS-CSHCN surveys. The scoring methods for the NS-CSHCN and 2007 NSCH excludes cases

from the valid denominator when there are responses of “Don’t know or Refused” to one or more

of the questions used for deriving a sub-component topic variable; the 2003 NSCH method only

excludes cases when there are “Don’t know or Refused” responses to all questions used for

deriving a sub-component topic variable.

The scoring programs for each survey also employ different strategies to identify cases

that meet the threshold criteria for a sub-component topic. The 2003 NSCH uses an approach,

described in detail elsewhere,3 previously developed for use with other surveys which typically

assessed three or more concepts per sub-component topic. This method assigns points ranging

from 0-100 to responses for each relevant question and calculates the average score across all

valid responses within a sub-component topic. A score of 75 points or greater is used as the

threshold criteria. When applied to surveys that assess a maximum of two concepts per sub-

component topic, such as the 2003 NSCH, the “average score” method yields the same results as

the approach for the NS-CSHCN and 2007 NSCH which requires a discrete set of responses,

such as “Usually or Always,” on every relevant question within a sub-component topic in order

to meet the threshold criteria.13

These different methods used for creating sub-component topic variables are artifacts of

on-going efforts to develop robust methodologies for measuring medical home using population-

based child health surveys. The differences approaches to medical home measurement taken

earlier by the NSCH and NS-CSHCN have been reconciled through the alignment of the 2007

NSCH medical home content and scoring parameters with those used for the 2005/06 NS-

CSHCN.

The threshold criteria for the 2003 NSCH sub-component topics used to measure medical

home are outlined below



b. Threshold criteria = YES responses indicating child has either one or more than one personal doctor or nurse

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2. Preventive care visit during past 12 months


b. Threshold criteria = Responses indicating that child had one or more preventive care visits with any provider during the past 12 months

3. Family-centered care from PDN

a. Constructed from 2 or 3 items

b. Threshold criteria = responses of USUALLY or ALWAYS (> 75 points) to questions asking about communication with child’s PDN and adequacy of time PDN spends with child, AND if needed, responses of USUALLY or ALWAYS to question about access to interpreter services during child’s health care visits

c. The question about need for interpreter help during child’s health care visits is asked only for children living in households with primary languages other than English


a. Constructed from up to four items

b. Filter questions are used to identify the children who needed urgent care or phone advice, or both from a PDN during the past 12 months. Only respondents reporting that the child needed one or both of these specific types of care are asked the related questions about how often such care was available when needed.

c. Threshold criteria = If needed during the past 12 months, responses of USUALLY or ALWAYS (> 75 points) to question on availability of urgent care from child’s PDN, AND if needed during the past 12 months, responses of USUALLY or ALWAYS (> 75 points) to question on availability of phone advice from child’s PDN

5. Access to needed specialist care and/or specialized services or equipment

a. Constructed from up to 4 items

b. Filter questions are used to identify children who have PDNs and needed care from a specialist doctor or needed specialized health services/equipment, or both during the past 12 months. Only respondents reporting that the child needed one or both of these specific types of care are asked whether they experienced any problems accessing the care needed by the child.

c. Threshold criteria = If needed, responses of “NO PROBLEM or SMALL PROBLEM” (> 75 points) to getting specialist care for child, AND if needed, responses of “NO PROBLEM or SMALL PROBLEM” (> 75 points) to getting specialized health services or equipment needed by child

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6. Follow up by PDN after child receives specialist care and/or specialized services

a. Constructed from up to two items

b. Filter questions are used to identify children who have PDNs and needed care from a specialist doctor or specialized health services/equipment, or both during the past 12 months. Only respondents reporting that the child needed one or both of these specific types of care are asked how often child’s PDN follows up with family after child receives such care.

c. Threshold score = If needed during the past 12 months, responses of USUALLY or ALWAYS (> 75 points) when asked how often child’s PDN follows up after child visits a specialist, AND if needed during the past 12 months, responses of USUALLY or ALWAYS (> 75 points) when asked how often child’s PDN follows up after child gets specialized health services

Additional information, including details such as the survey item numbers of questions

used for the medical home measures and the interim variables used to construct each sub-

component topic variable are found with the SAS and SPSS user resources in Appendices C_1

and C_2.

2003 NSCH medical home composite measure: The scoring programs provided in

Appendices C_1 and C_2 use the “on every” method (see section 3.2) to construct a dichotomous

composite measure that classifies children as either having or not having a medical home. To be

categorized as having a medical home using 2003 NSCH, children must:

A) Meet all three 2003 NSCH baseline criteria for having a medical home (Fig. 1)

B) AND either receive care that meets the threshold criteria for or qualify as a legitimate skip on each of the three additional sub-component topics

Figure 3 on the next page presents six hypothetical cases – each illustrating how a

different set of the scoring results culminates in the final medical home outcome using the “on

every” approach to construct the composite measure. For brevity, the variable names shown in

Table 6 are used in Figure 3 to denote each of the six sub-component topics. The details of the

derived variables are further described in Table 6 and in Appendices C_1 and C_2.


Figure 3: National Survey of Children’s Health (NSCH), 2003 Scoring algorithm examples for the 2003 NSCH Medical Home composite measure


Derived variable names for the 2003 NSCH sub-component topics (see Table 6)

Child #1

Child #2

Child #3

Child #4

Child #5

Child #6

“Baseline criteria for medical home” S5Q01 Yes Yes Yes Yes Yes --

PDNCOM_2 Yes Yes Yes Yes Yes --

PC_2 Yes Yes Yes No Yes Yes

CARE_2 Yes X X Yes No --

ACC_2 Yes Yes X Yes Yes --

COOR_2 Yes Yes X Yes Yes --


X = Legitimate skip – child did not need the type of care addressed by this topic -- = System missing or “Don’t know/Refused” responses for all questions used to derive sub-component topic variable * = Cases with “Don’t know/Refused” or systems missing responses to the question asking whether child has at least one personal doctor or nurse are not asked any further questions in the medical home section of the survey. These cases are coded as “missing” and not included in the valid denominator when calculating the overall medical home composite score.

As illustrated in Figure 3, the 2003 NSCH baseline criteria for having a medical home

require a child to have at least one personal doctor or nurse from whom he or she receives

family-centered care AND at least one preventive medical care visit with any provider during the

past year. In addition to meeting the three baseline criteria for medical home, children must also

receive care that meets the threshold criteria OR qualify as a “legitimate skip” because care was

not needed on each of the three additional sub-component topics measured in the survey (Figure

3, child #1 through child #3) to be classified as having a medical home. As illustrated by

example child #4, failing to achieve even one of the three baseline criteria classifies a child as

not having a medical home. On the other hand, children who meet all three of the baseline

criteria qualify as having a medical home even if they did not need the types of care assessed

under the remaining three sub-component topics (Figure 3, child #3).

Children with responses of NO, “Don’t Know, Refused” or system missing to the

personal doctor/nurse question (S5Q01) are automatically classified as not having a medical

home, even if they meet the threshold criteria for having a preventive care visit with any provider

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during the past 12 months (Figure 3, child #6). This is because no further questions in the

medical home section of the survey are asked for children reported to not have a personal doctor

or nurse and those with unknown responses. Subsequently, these cases appear as “system

missing” for all questions used to derive the remaining sub-component topic variables other than

that for preventive care visits.

Finally, the NSCH medical home scoring programs provided in the appendices treat cases

that have either system missing or “Don’t Know/Refused” responses to the personal doctor or

nurse question – and consequently appear as system missing for the questions used to assess all

remaining topics other than preventive care visits – as missing data. These cases are not included

in the valid denominator when calculating the composite measure (Figure 3, child #6).

Nationally, about 1 percent of sample children were not included in the valid denominator for the

2003 NSCH medical home composite measure.

Resources for measuring medical home using 2003 NSCH data: Appendices C_1 and

C_2 offer resources to guide SAS and SPSS users in constructing the sub-component topic

variables and the composite measure of medical home using data elements from the 2003 NSCH,

including:

• Overview tables with derived variable names from SAS and SPSS medical home

scoring programs

• SAS and SPSS programming code for creating the overall medical home composite

measure, each of the sub-component topic scores and associated interim variables

from 2003 NSCH data elements

• Summary tables with aggregate results for the 2003 NSCH Medical Home composite

measure outcome, sub-component scores and associated interim variable

• Tables with text, response options and associated skip pattern details for each of the

survey items used in the SAS and SPSS scoring programs


measure, sub-component topic variables and associated interim variables produced by

the SAS or SPSS programs. Another useful resource, the 2003 NSCH indicator

codebook, is available at: www.childhealthdata.org



3.5 Medical home measurement using 2007 NSCH data elements

The overall medical home measure from the 2007 NSCH is a composite of five different



2. Family-centered care

3. Getting needed referral

4. Usual source(s) for care

5. Effective care coordination

Table 7 organizes the five medical home topics assessed by the 2007 NSCH according to the

specific definitional components of the AAP medical home model each is intended to measure.

A total of 18 questions from the 2007 NSCH are used to develop the medical home composite

measure.

Sub-component topic denominators: Two of the 2007 NSCH sub-component topics are

relevant for all sampled children; the content of the remaining topics apply only to those children

who needed the types of care being asked about. Children with survey responses indicating a

specific type of care was not needed are designated as “legitimate skips” for scoring purposes

because parents cannot legitimately be asked questions about care that children did not need or

receive. The relevant denominators for the five sub-component topics are as follows:

1. Two sub-component topics (Have at least one personal doctor or nurse; Usual

source(s) for care) include all children in the sample.

2. One sub-component topic (Family-centered care) includes only those children who

used one or more of the following services during the past 12 months: preventive

medical care, preventive dental care, mental health care, needed or received care from

specialist doctors. Children who did not use any of these services during the past 12

months are considered “legitimate skips” for scoring purposes.

3. Two sub-component topics (No problems obtaining referrals; Effective care

coordination) pertain only to children who qualify as needing these services during

the past 12 months. Children with survey responses that do not qualify for needing

these services are considered “legitimate skips” for scoring purposes.

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Sub-component topic thresholds and legitimate skips: Table 7 summarizes the threshold

and legitimate skip criteria for each of the 2007 NSCH medical home sub-component topics. The

SPSS scoring program provided in Appendix D_1 create the five derived variables listed in the

second column of the table – one for each of the sub-component topics used to construct the

medical home composite measure from 2007 NSCH data elements.

Table 7: Measuring Medical Home using 2007 NSCH data elements: Sub-component topic variables

Sub-component topics measured within each AAP Medical Home definitional component


RELATIONSHIP WITH SPECIFIC PROVIDER 1. Has at least one “personal

doctor or nurse”

PDN

Responses “Yes, one person” or “Yes, more than one person” to personal doctor or nurse question


ACCESSIBLE -- -- --

FAMILY-CENTERED 2. Receives family-centered

care

FAMCENT Responses of “Usually or Always” to all family-centered and culturally effective care questions

Responses indicating child did not use any preventive medical care or preventive dental care or mental health or specialist care during past 12 months; interpreter services question asked only for children with a primary household language other than English

CONTINUOUS -- -- --

COMPREHENSIVE 3. Getting needed referrals

NOREFPRB “Not a problem” response to question about obtaining needed referrals

Response indicating child did not need a referral in the past 12 months to see any doctors or receive any services

4. Usual source(s) for care USUAL

Responses indicating child has regular source(s) of health care other than hospital emergency room


COORDINATED 5. Getting effective care

coordination when needed

CARECOOR Responses indicating family currently receives assistance with care coordination or gets needed extra help, and if needed, responses of “Very satisfied” to the questions about doctors’ communication with each other or with child’s school/other programs.

The care coordination questions are asked only for children who used 2 or more of the following services in the past 12 months: preventive medical care, preventive dental care, mental health care, needed or received care from a specialist doctor. Children who used less than 2 services or do not currently get and did not need extra help to coordinate child’s care are considered legitimate skips.


CULTURALLY EFFECTIVE Responses to questions addressing culturally effective care included in the Family-centered Care sub-component scoring

-- Not assessed by survey (See Table 2 for details) *2007 SPSS variable names shown in the table


Scoring sub-component topics: The scoring parameters for 2007 NSCH medical home

sub-component topics in Table 7 are briefly outlined below:


a. Constructed from a single item; asked for all children in the sample

b. Threshold criteria = Responses of YES, ONE PERSON or YES, MORE THAN ONE PERSON to question asking if there are one or more persons that the respondent considers as being the child’s personal doctor or nurse

2. Receives family-centered care

a. Constructed from up to seven questions

b. Threshold criteria = responses indicating child used 1 or more of the following services in the past 12 months: preventive medical care, preventive dental care, mental health care, needed or received care from a specialist doctor AND responses of USUALLY or ALWAYS to all five family-centered care questions, AND if primary household language is other than English AND child’s family needed interpreter help to speak with child’s doctors, responses of USUALLY or ALWAYS to accessing interpreter services during child’s health care visits

3. No problems obtaining referrals

a. Constructed from up to 2 items

b. Threshold criteria = YES response to referrals being needed in past 12 months in order for child to see other doctors or receive services AND response of NOT A PROBLEM to getting the needed referrals

4. Usual source(s) for care

a. Constructed from two items

b. Threshold criteria = responses indicating that child has regular source(s) for care other than hospital emergency room when sick or advice is needed about his/her health

5. Receives effective care coordination

a. Constructed from up to six items

b. Threshold criteria = Child used 2 or more of five different health services during the past 12 months (preventive medical care, preventive dental care, mental health care, needed or received care from a specialist doctor) AND affirmative responses indicating (a) family currently receives help coordinating child’s care and does

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not need extra help, OR if extra help was needed, family USUALLY received the help desired; OR (b) no help coordinating care was reported AND no need for extra help coordinating care was reported; AND (c) if child used any of five different specialized services and communication between doctors was needed, responses of VERY SATISFIED with that communication, AND (d) if needed, responses of VERY SATISFIED with communication between doctors and child’s school or other programs.

Additional information such as the survey-specific item numbers, exact text of the medical

home questions, and details of the interim variables developed to construct each sub-component

topic score is included with the user resources for the 2007 NSCH in Appendices D_1.

2007 NSCH medical home composite measure: The SPSS scoring program in Appendix

D_1 uses the ‘on every’ method (see section 3.2) to construct the dichotomous composite

measure classifying children as either having or not having a medical home. To qualify as having

a medical home as measured by the 2007 NSCH, children must:

A) Meet both 2007 NSCH baseline criteria for having a medical home (see Fig. 1)

B) AND, either receive care meeting the threshold criteria or qualify as a legitimate skip on each one of the three additional sub-components topics.

Figure 4 presents six hypothetical cases – each illustrating how different combinations of

sub-component topic results culminate in the final medical home outcome using the “on every”

approach to construct the composite measure. For brevity, the variable names shown in Table 7

are used in Figure 4 to denote each of the five sub-component topics. The details of these derived

variables are described in Table 7 and in Appendix D_1.

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Figure 4: National Survey of Children’s Health (NSCH), 2007

Scoring algorithm examples for the 2007 NSCH Medical Home composite measure


Derived variable names for the 2007 NSCH sub-component topics (see Table 7)

Child #1

Child #2

Child #3

Child #4

Child #5

Child #6

“Baseline criteria for having a medical home”

PDN Yes~ Yes Yes No Yes Yes

USUAL Yes Yes Yes Yes Yes Yes

FAMCENT Yes Yes X Yes Yes --

NOREFPRB Yes X X Yes No Yes

CARECOOR Yes X X Yes Yes Yes


X = Legitimate skip – child did not need the type of care addressed by this topic -- = System missing or “Don’t know/Refused” responses to 1 or more questions used to derive the sub-component topic variable * = Children with missing or “Don’t know/Refused” responses for 1 or more sub-component topics variables are NOT included in the

valid denominator when calculating the overall medical home composite score

As illustrated in Figure 4, the 2007 NSCH minimum criteria for medical home requires

children to have at least one personal doctor/nurse AND usual source(s) for care when sick or

advice about health is needed. In addition to meeting both of these baseline criteria, children also

must receive care meeting the threshold criteria for OR qualify as a “legitimate skip” on each of

three additional sub-components topics measured in the survey (Figure 4, child #1 through child

#3). Failing to meet either one of the baseline criteria automatically categorizes a child as not

having a medical home, regardless of whether he or she receives care meeting the thresholds for

all the other sub-component topics (Figure 4, child #4). On the other hand, children meeting the

two baseline criteria qualify as having a medical home, even if they did not need any of the other

types of care assessed within the three remaining sub-component topics (Figure 4, child #3).

Conversely, if a child meets the baseline criteria for having a medical home and received

care that did not meet the threshold for one or more sub-component topics, the result is “no

medical home” (Figure 4, child #5). Finally, cases with responses classified as “Don’t

Know/Refused” or system missing on the subcomponent topic variables are not included in the

denominator when calculating the medical home measure (Figure 4, child #6). Nationally, about

4 percent of children in the sample were excluded from valid denominator used for the 2007

NSCH medical home composite measure.

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Resources for measuring medical home using 2007 NSCH data elements: Appendix

D_1 offers a set of resources to guide SPSS users in constructing the sub-component topic

variables and composite medical home measure using 2007 NSCH data elements. These

resources include:

• Overview tables with derived variable names from the SPSS medical home scoring

programs and associated 2007 NSCH data elements

• SPSS programming code for creating the overall medical home composite measure,

each of the various sub-component topic scores and associated interim variables

• Summary tables showing aggregate data results for the Medical Home composite

measure, sub-component topic and associated interim variables using 2007 NSCH

data elements

• Tables with the text, response options and associated skip pattern details for each of

the survey items from the 2007 NSCH used in the SPSS medical home scoring

programs


measure, each of the sub-component topic variables and associated interim variables

produced by the SPSS programming code for constructing the 2007 NSCH medical

home measure

• Other resources for data users are the 2007 NSCH indicator codebooks available

through the Data Resource Center for Child and Adolescent Health website:

www.childhealthdata.org



IV. MEDICAL HOME FINDINGS FROM THE NS-CSHCN AND NSCH

Although the methods and content addressing medical home differ in important ways, the

NS-CSHCN and the NSCH share in common the “on every” scoring approach used to calculate

the medical home composite measures derived from these surveys. Table 8 shows the crude

results from using the “on every” approach to arrive at the prevalence of children with medical

homes based on the various data elements available from the 2001 NS-CSHCN, 2005/06 NS-

CSHCN, 2003 NSCH, and 2007 NSCH. National and state-specific results from all years of the

NS-CSHCN and the NSCH are also available to query on the Data Resource Center for Child

and Adolescent Health website (www.childhealthdata.org).

4.1 Overall prevalence

Despite differences in the methods and specific content involved, the medical home

composite measure results across the surveys are remarkably consistent (Table 8). Regardless of

health status, roughly one-half of the children in the United States (range: 44.0% to 57.5%) meet

the AAP definition for having a medical home as operationalized through the NS-CSHCN and

NSCH surveys. Although the overall medical home prevalence tends to be similar, there are

substantial variations across the surveys in the proportion of children meeting the inclusion

criteria for several medical home sub-components. In some cases, revisions to the questions and

methods used to identify valid responders for a sub-component are the principal sources for this

variation. For example, in the 2001 NS-CSHCN, nearly 90% of children did not meet the

inclusion criteria for the coordinated care sub-component of medical home and subsequently

were classified as “legitimate skips” on the basis of not needing such care (Table 8). Due to

improvements to the questions used to assess need for care coordination, only 22% of children

failed to meet the inclusion criteria for the 2005/06 NS-CSHCN coordinated care sub-component

(Table 8).

Factors such as children’s health status and differential needs for health care also

contribute to variation in sub-component denominator sizes for different groups. In the 2003

NSCH, over 50% of the children identified as having special health care needs required one or

more of the specialized health care or services necessary for inclusion in the access to specialty

care and services subcomponent topic denominator (Table 8; 11.5% + 42.7%). In contrast, in the

same survey only 16% of children without special health care needs required the types of

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specialized care or services that are the prerequisite for inclusion in the denominator of this

subcomponent topic. Using different content and methods, the 2007 NSCH shows a similar

pattern with about one third of CSHCN needing referrals for specialty or services compared to

16 percent of non-CSHCN.

These and other findings from the various administrations of the NS-CSHCN and the

NSCH provide useful insights into the influence of question design and underlying population

characteristics when assessing the complex and multi-factored medical home concept. Section

4.3 takes a closer look at the contribution of some of these factors to the overall medical home

composite scores.

Appendix E provides a list of publications reporting on various analyses using the

medical home composite measures or associated sub-components from the NS-CSHCN and

NSCH. Several of these articles demonstrate state-specific applications of the medical home data

from these surveys.


TABLE 8: Percent of children meeting the criteria for having a medical home overall and within each measured sub-component topic, by survey†

2001 NS-CSHCN

2005/06 NS-CSHCN 2003 NSCH 2007 NSCH

Percent with MEDICAL HOME overall:† %

(95% CI)%

(95% CI) %

(95% CI)%

(95% CI)

All children, ages 0-17

CSHCN, ages 0-17

--

52.6 (51.7 - 53.6)

--

47.1 (46.3 – 48.0)

46.1 (45.6 - 46.7)

44.2 (42.9 - 45.4)

57.5 (56.5 – 58.6)

49.8 (47.5 – 52.0)

Sub-component topics measured within each AAP Medical Home definitional component:

CSHCN, ages 0-17

(%)

CSHCN, ages 0-17

(%)


(%)

CSHCN, Only (%)


(%)

CSHCN, Only (%)

ESTABLISHED RELATIONSHIP WITH SPECIFIC PROVIDER

Has at least one “personal doctor or nurse”

89.0

93.5

83.3

90.0

92.2

94.7

ACCESSIBLE -- -- -- -- -- --

FAMILY-CENTERED

Family-centered care(FCC) from ALL child’s doctors and other health care providers

a) No, does not have FCC care b) Yes, has FCC care c) Legitimate skip

Family-centered care (FCC) from child’s personal doctor or nurse

a) No, does not have FCC car b) Yes, has FCC care c) Legitimate skip

31.9 64.2 3.9

-- -- --

32.5 62.4 5.1

-- -- --

-- -- --

17.7 65.2 17.1

-- -- --

16.3 73.4 10.3

31.6 65.1 3.3

-- -- --

34.1 64.8 1.1

-- -- --

CONTINUOUS -- -- -- -- -- --

† All estimated percentages are weighted to represent the U.S. non-institutionalized child population ages 0-17; (95% CI) = 95% confidence interval -- Not assessed by survey (See Table 2 for details)

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Measuring Medical Home Using Data Elements from the NS-CSHCN or NSCH

- 45 -

TABLE 8: (continued)†

2001 NS-CSHCN

2005/06 NS-CSHCN 2003 NSCH 2007 NSCH

Sub-component topics measured within each AAP Medical Home definitional component:

CSHCN, ages 0-17

(%)

CSHCN, ages 0-17

(%)


(%)

CSHCN, Only

(%)


(%)

CSHCN, Only

(%)

COMPREHENSIVE Getting needed referrals

a) Needed, problems getting b) Needed, no problem getting c) Legitimate skip

Usual source(s) for both sick and well care

Preventive care visit during past 12 months

Consistent access to urgent care and/or phone advice from personal doctor or nurse

a) Needed, did not consistently get b) Needed, consistently got c) Legitimate skip

Getting needed specialist care, and/or specialized health services or equipment

a) Needed, problems getting b) Needed, no problem getting c) Legitimate skip

10.8 38.8 50.3

90.5

--

-- -- --

-- -- --

7.0 26.0 67.0

92.9

--

-- -- --

-- -- --

-- -- --

--

77.8

3.6 40.1 56.2

3.5 19.2 77.3

-- -- --

--

86.5

6.3 55.3 38.4

11.5

42.7

45.9

2.8 13.1 84.1

93.1

--

-- -- --

-- -- --

7.0 25.2 67.8

94.8

--

-- -- --

-- -- --

COORDINATED

Getting effective care coordination when needed a) Did not get all help wanted b) Got all help wanted c) Legitimate skip(no report of getting or wanting

more help with care coordination)

Follow up by personal doctor or nurse after child sees specialist care and/or gets specialized health services

a) Needed, did not consistently get b) Needed, consistently got c) Legitimate skip

6.7 4.5

88.8

-- -- --

31.8 46.0 22.2

-- -- --

-- --

--

9.4 12.9

77.6

-- --

--

24.2 29.4

46.4

12.9 28.3 58.8

-- -- --

29.7 43.4 26.9

-- -- --

COMPASSIONATE The concept of “compassionate care” is addressed in the context of the family-centered care questions

CULTURALLY EFFECTIVE For scoring purposes, questions addressing this topic are included in the Family-centered care sub-component

†All estimated percentages are weighted to represent the U.S. non-institutionalized child population ages 0-17 -- Not assessed by survey (See Table 2 for details)


4.2 Medical home prevalence by demographic characteristics

Table 9 displays the medical home results again, this time by selected child demographic

characteristics. As the results in the table show, the prevalence of having a medical home as

measured by the NS-CSHCN and NSCH surveys rarely exceeds 60%, even when subgroups of

children are considered. Notable exceptions include non-Hispanic White children and those with

household incomes at or exceeding 400 percent of the federal poverty level. In the 2007,

nearly70 percent of children from these groups met the NSCH criteria for having a medical home

(68.0% and 69.3%, respectively). Children from vulnerable groups are dramatically less likely to

have a medical home (Table 9). In the same survey, medical home prevalence is 39% for

children whose families have incomes at or below the poverty level, and 46% for those covered

by public health insurance. Fewer than half of children who are lower-income, intermittently

insured or uninsured children, or non-White or Hispanic had a medical home in 2007. Children

with special health care needs, a group with even greater requirements for coordinated and

comprehensive care, fared no better and often significantly worse than their non-special needs

counterparts.

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TABLE 9: Prevalence of Medical Home overall and by demographic characteristics -- U.S. non-institutionalized child population, ages 0-17†

2001 NS-CSHCN

2005-06 NS-CSHCN 2003 NSCH 2007 NSCH

CSHCN, ages 0-17

CSHCN, ages 0-17

All children, ages 0-17 CSHCN only All children,

ages 0-17 CSHCN only

Number of children in sample (unweighted) 38,866 40,723 102,353 18,578 91,642 18,352

Percent meeting Medical Home criteria† (95% CI)

52.6 (51.7 - 53.6)

47.1 (46.3 – 48.0)

46.1 (45.6 - 46.7)

44.2 (42.9 - 45.4)

57.5 (56.5 – 58.6)

49.8 (47.5 – 52.0)

Medical home prevalence by child characteristics

% (95% CI)

% (95% CI)

% (95% CI)

% (95% CI)

% (95% CI)

% (95% CI)

Age

0 – 5 years old 53.5 50.4 55.9 48.7 64.0 55.4 (51.3 - 55.7) (48.4 – 52.3) (54.9 - 56.9) (45.7 - 51.6) (62.1 – 65.8) (50.2 – 60.4)

6 – 11 years old 53.8 47.4 42.7 43.9 55.2 47.2 (52.4 - 55.3) (46.1 – 48.8) (41.7 - 43.6) (41.8 - 46.0) (53.3 - 57.0) (43.6 - 50.8)

12 – 17 years old 51.1 45.2 40.2 42.2 53.4 49.4 (49.6 -52.6) (44.0 – 46.5) (39.3 - 41.0) (40.4 - 44.1) (51.7 - 55.1) (45.9 - 52.9)

Race/ethnicity White/non-Hisp 56.9 52.8 52.8 47.2 68.0 57.0

(55.9 - 58.0) (51.8 – 53.8) (52.2 - 53.4) (45.8 - 48.6) (66.8 - 69.1) (54.4 - 59.6)

Hispanic 40.7 32.2 30.3 34.9 38.5 31.8 (37.5 - 44.0) (29.5 – 35.0) (28.9 - 31.7) (30.5 - 39.6) (35.5 - 41.7) (25.3 - 39.2)

Black/non Hisp 44.3 36.6 39.4 40.9 44.2 39.6 (41.5 - 47.2) (34.3 – 38.9) (37.8 - 40.9) (37.2 - 44.8) (41.6 - 46.8) (34.2 - 45.2)

Multi racial/non-Hisp 49.7 46.8 46.0 38.0 63.0 49.9 (44.4 - 55.0) (42.3 – 51.3) (43.1 - 48.9) (32.2 - 44.3) (58.0 - 67.8) (41.2 - 58.7)

Other/non-Hisp 38.3 40.0 41.5 39.2 48.6 42.7 (31.9 - 45.1)

(35.2 – 44.8) (37.7 - 45.3) (30.0 - 49.2) (44.0 - 53.2) (30.7 - 55.7)

Household Income as percentage of Federal poverty level (FPL)

0- 99% FPL 37.9 34.0 31.2 34.6 39.4 37.1 (35.3 - 40.5) (32.0 – 36.0) (29.5 – 32.9) (30.8 – 38.6) (37.3 – 41.5) (33.4 – 41.0)

100% - 199% FPL 48.7 41.2 39.6 42.2 49.4 44.5 (46.5 - 50.9) (39.3 – 43.0) (38.2 – 41.0) (38.9 – 45.7) (47.5 – 51.3) (40.8 – 48.3)

200% - 399% FPL 56.2 51.1 50.1 46.7 62.5 55.4 (54.5 - 57.9) (49.6 – 52.6) (49.0 – 51.1) (44.3 – 49.2) (61.0 – 63.9) (52.0 – 58.7)

400% FPL or greater 59.7 56.3 56.9† 49.4 69.3 56.4 (57.8 - 61.5) (54.8 – 57.8) (55.8 – 58.0) (46.9 – 51.9) (68.0 – 70.6) (53.1 – 59.6)

Income not reported 50.3 †† †† †† †† ††

(CONTINUED) (47.3 - 53.2)

- 47 -


- 48 -

2001 NS-CSHCN

2005-06 NS-CSHCN 2003 NSCH 2007 NSCH

CSHCN, ages 0-17

CSHCN, ages 0-17

All children, ages 0-17 CSHCN only All children,

ages 0-17 CSHCN only Health insurance status, past 12 months

Insured full year; no gaps 54.4 47.9 49.3 45.9 60.9 52.5 (53.4 - 55.4) (47.0 – 48.8) (48.7 - 49.9) (44.5 - 47.2) (59.8 - 62.0) (50.1 - 54.9)

Uninsured for some period of time 40.0 26.5 28.3 32.3 38.4 29.9 (36.9 - 43.2) (22.8 – 30.2) (27.0 - 29.7) (28.8 - 36.0) (35.4 - 41.4) (24.5 - 36.0)

Type of health insurance Private or employer-based coverage 58.2 53.3 52.6 47.7 66.5 56.6 (57.0 - 59.3) (52.2 – 54.3) (52.0 - 53.3) (46.2 - 49.2) (65.3 - 67.8) (53.6 - 59.6)

Publicly insured (Medicaid; SCHIP) 43.7 38.9 38.9 40.2 45.4 42.1 (41.6 - 45.9) (37.2 – 40.6) (37.7 - 40.0) (37.8 - 42.7) (43.3 - 47.6) (38.6 - 45.7)

Uninsured at time of survey 36.4 26.5 23.1 30.2 35.7 28.9 (32.5 - 40.5) (22.8 – 30.2) (21.6 - 24.6) (25.4 - 35.6) (32.1 - 39.5) (21.8 - 37.4)

Primary household language English n/a 48.3 49.3 45.4 61.7 51.8 (47.4 – 49.3) (48.8 - 49.9) (44.1 - 46.6) (60.7 - 62.8) (49.5 - 54.1)

Other than English n/a 22.1 23.8 22.7 28.8 16.8

(46.2 – 48.1) (22.2 - 25.5) (17.3 - 29.3) (25.2 - 32.6) (11.2 - 24.5)

Language of the interview English 53.6 n/a n/a n/a n/a n/a (52.7 - 54.6) Other than English 23.1 n/a n/a n/a n/a n/a

(18.5 - 28.4)

Qualifying special health care needs criteria

Managed by Rx meds only 63.9 58.9 n/a 54.3 n/a 62.5 (62.5 - 65.4) (57.6 – 60.2) (52.3 - 56.3) (58.6 - 66.1)

Elevated services use/need only 41.1 35.8 n/a 31.5 n/a 39.3 (38.7 - 43.6) (33.5 – 38.1) (28.5 - 34.8) (34.1 - 44.6)

Elevated service need AND Rx meds 53.6 45.2 n/a 45.5 n/a 50.1 (51.7 - 55.6) (43.4 – 47.0) (43.0 - 48.1) (45.6 - 54.6)

Functional limitations -- alone or with any services or Rx meds use

41.2 (39.3 - 43.2)

32.2 (30.4 – 33.9)

n/a 33.2 (30.7 - 35.9)

n/a 34.6 (30.2 – 39.2)

† All estimates are weighted to represent the U.S. non-institutionalized child population ages 0-17; (95% CI) = 95% confidence interval †† When income and/or number of persons in household were not reported, Federal Poverty Level (FPL) of household was estimated using single imputation methods n/a = information not collected by survey


4.3 Influence of survey design on medical home prevalence

Personal doctor or nurse criterion: Prior to the availability of data from the NS-CSHCN

and NSCH, States and others often relied upon the proportion of children with a primary care

provider, or as it is sometimes termed; “a personal doctor or nurse,” as the sole indicator of

whether children have a medical home. The advent of more robust assessments, such as those

from the NS-CSHCN and NSCH, demonstrated that having a personal doctor or nurse alone is

not sufficient for having a medical home as defined by the AAP. At the same time, whether or

not children have affirmative responses indicating the presence of a PDN continues to be a

significant factor in determing the medical home prevalence estimates generated by these

surveys.

Both the NS-CSHCN and NSCH include having a personal doctor or nurse (PDN) as one

of several basic or minimum criteria for having a medical home. Children with response of NO

to the survey question about having one or more personal doctors or nurses are classified from

the outset as not having a medical home, regardless of whether they achieve thresholds scores on

all other components of the medical home measure.

In the 2007 NSCH, about 8 percent of children overall were without any PDN. Some

groups of children, however, have a disproportionately higher risk. Black, non-Hispanic children

are twice as likely and Hispanic children are three times more likely to not have any PDN

compared to white, non-Hispanic children (Fig. 5). Similar disparities in meeting the baseline

criterion of having at least one PDN strongly contribute to the lower prevalence of medical home

among non-white and Hispanic children found in the 2003 NSCH and NS-CSHCN surveys

(Table 9).

Figure 5: Children age 0-17 years with at least one personal doctor or nurse (PDN), by race/ethnicity – U.S. non-institutionalized child population, 2007

Source: National Survey of Children’s Health, 2003

- 49 -


Influence of question changes: In response to issues identified during the first

administration of the NS-CSHCN, the Effective Care Coordination and Getting Needed Referrals

sub-components of the medical home measure were revised prior to the survey’s second

administration in 2005/06 (see Sections 2.1 and 3.3). The questions for assessing these sub-

components underwent substantial changes in wording, design and content. Included were

significant modifications in the criteria used for identifying valid responders and legitimate skips

in each of these sub-components. Comparing the medical home results prior to and after these

types of revisions provides an opportunity to observe the effect of changes in question design

and content on the medical home composite score, and potentially, the estimates of medical

home prevalence overall.

Figure 6 compares the 2001 and 2005/06 NS-CSHCN distributions on each of the five

medical home sub-component topics for children meeting either the threshold criteria for getting

needed care or classified as “legitimate skips” because care was assumed and/or reported to not

be needed. The proportion of children either meeting threshold criteria or classified as legitimate

skips varies substantially across the five medical home sub-component topics within each and

across the two survey administrations. In 2001, Effective Care Coordination was the sub-

component topic with the highest combined proportion of threshold achievers and legitimate

skips (93.3%) and the Family-Centered Care sub-component topic was the lowest (68.1%).

Figure 6: Proportion of CSHCN receiving care that meets the threshold criteria or classified as “legitimate skips” within each medical home sub-component topic, by NS-CSHCN survey year

50

In 2005/06, the changes made to the care coordination questions greatly altered the

proportions of children either meeting the threshold criteria or classified as legitimate skips

within that sub-component topic. As Figure 6 illustrates, Effective Care Coordination went from

being the sub-component with the highest combined proportion of threshold achievers and

legitimate skips in 2001 to essentially tying with Family-Centered Care sub-component for the

lowest proportion in 2005/06 (68.2 % and 67.5%, respectively).

Although changes to the care coordination questions also dramatically changed the

individual proportions of children who were classified as needing care coordination and met the

threshold criteria or who were classified as not needing care coordination (legitimate skip) in the

2005/06 survey, it is actually the combined proportion of these two categories that has potential

to influence the overall medical home score. This is because the overall medical home results are

based on the proportion of children who either meet the threshold criteria or qualify as legitimate

skips on every one of the five sub-components topics. As such, the proportion of children

meeting the overall medical home composite measure cannot exceed the results for the sub-

component with the lowest combined proportion of threshold achievers and legitimate skips.

In 2001, the Family-Centered Care sub-component anchored the medical home

composite score by having the lowest combined proportion of threshold achievers and legitimate

skips. As a result of questions changes in the 2005/06, the Effective Care Coordination sub-

component tied with the Family-Centered Care sub-component for the lowest combined

proportion of threshold achievers and legitimate skips. Because of this tie, it was the 52 percent

of cases that either met the threshold criteria or were legitimates skips across both these of sub-

components that formed the new baseline proportion for the overall medical home score, rather

than 67.5 percent result for the Family-Centered Care sub-component.

From a question design perspective, it is interesting to note that changes in question

content and skip patterns do not always influence a composite measure. The 2005/06 questions

for the Getting Needed Referrals sub-component also underwent substantial revision. Although

these revisions changed the relative distributions of legitimate skips and threshold achievers

within the sub-component, the net effect was only a slight increase over the 2001 results for the

combined proportion of these cases (See Fig. 6). As a result, the question changes for this sub-

component had minimal, if any, effect on the overall medical home composite score in 2005/06.

- 51 -


V. FUTURE WORK TO REFINE MEASUREMENT OF THE MEDICAL HOME

The NS-CSHCN and NSCH represent major strides toward the development of robust,

policy-relevant measures of the AAP’s medical home definition for children and youth. Still,

work should continue to better understand the utility of various approaches to measuring the

medical home concept. The intent of the following discussion is to provide a brief overview of

alternative measurement strategies and considerations when using the NS-CSHCN and NSCH

approaches in research and policy contexts.

5.1 Other classification approaches

Nominal and ordinal measures: If a single summary measure of the medical home

model is the goal of the measurement process, the first issue to be confronted is the level of

measurement to use for that single variable. The dichotomous composite measure described in

this manual classifies children as either having or not having a medical home. One alternative is

to classify children according to the specific defined sub-components of medical home

measurement approaches outlined in this manual and derive alternative nominal or ordinal

measures based on results. One hypothetical set of nominal categories may include:

1. Evidence of the presence of at least 5 of the 7 components of a medical home

2. Evidence of components 1, 2, 4, and 5

3. Evidence of components (1, 2, and 4) or (1, 2, and 5)

4. Evidence of components (1, 4, and 5) or (2, 4 or 5)

5. Evidence of only 1-2 components of a medical home

6. No evidence of a medical home

These measurement examples are nominal because there is no obvious and consistent

ordering of the categories.

Another approach to creating a limited set of categories would be to aim for a more

consistent ordering. One hypothetical set of ordinal categories for the medical home concept

might potentially classify children as follows:

1. Evidence of the presence of at least 5 of the 7 components of a medical home

2. Evidence of any 4 components


- 52 -


5. Evidence of only 1 component

6. No evidence of a medical home

“Across all” approach: The “across all” approach, originally developed using data from

other child health surveys3, is another alternative to the “on every” scoring method described in

Section 3.2. Like the “on every” method, the “across all” approach uses the scoring parameters

described in early sections of the manual to develop each of the separate sub-component scores.

The difference is that the “across all” approach does not require the creation of categorical

variables that classify children according to whether they achieve or fail to achieve the threshold

scores in each of the sub-components for which they meet the inclusion criteria. Instead, point

values are standardized using a 0-100 scale in which 75 points or above is the equivalent of

consistently getting needed care. The standardized values are used to compute an average score

for each sub-component in which the child meets the inclusion criteria. To create the overall

composite measure, the sub-component point averages are first summed and then divided by the

number of sub-components for which the child met the inclusion criteria. Children with an

overall mean score of 75 points or above across all needed sub-components are classified as

having a medical home. Children with an overall mean of less than 75 points are classified as not

having a medical home. This is a less stringent threshold for having a medical home than that

used by the “on every” method. Under the “across all” approach, some children will be

classified as having a medical home even though they do not actually achieve a score of 75

points or above on every specific aspect of the medical home for which they are valid

responders. In contrast, the more exacting criteria of the “on every” method requires that children

achieve a threshold score on every sub-component for which they meet the inclusion criteria of

needing care.

Continuous measures of “medical home-ness:” Another potential way to quantify the

medical home concept is to create a continuous measure. One way to approach this would be to

calculate an average of the points achieved for each child by using the “across all” sub-

components grand mean or the sub-component point averages directly, without defining

threshold values. Rather than describing the proportion of children meeting a specific threshold

for having medical home, a continuous measure of this type would lead to reporting an average

medical home score using a 0-100 scale. Such a measure would provide information about the

- 53 -


degree of medical home-ness by indicating how close or far children are from having the full

complement of medical home characteristics outlined in the AAP definition. More information

on constructing such a score can be found in Bethell, Read, et al.3

Continuous medical home scores could be reported across all components combined or

separately for each medical home sub-component. Such an approach might lead, for example, to

statements such as, “The average score for all measured components of the medical home

concept among survey respondents was 68 points using a 0-100 scale;” or “The average score for

care coordination among survey respondents was 80 points out of 100, while the average score

for compassionate care was 62 points out of 100.” As with other approaches, methods for

developing a continuous measure of medical home need to include strategies that accommodate

children who do not need every aspect of care measured.

Potential applications: The use of dichotomous, nominal, or ordinal categories

influences the type of further statistical analyses to be carried out, as well as the type of statistics

that can be reported. As with any evaluation activity, it is important to choose methods and

metrics appropriate for the purposes and goals of the research questions and reporting

requirements.

Defining a dichotomous medical home variable as done using the “on every” method

described in this manual or the “across all” approach outlined above leads to reporting of a single

proportion reflecting the prevalence of children classified as having a medical home. For

surveillance reporting, a dichotomous outcome is very useful as a high level “signal” of the

current status in the population. For other reporting purposes, nominal categories can be valuable

for understanding of the relative prevalence of particular combinations of the components and

sub-components of the medical home. Such information would call attention to gaps and point to

potential initiatives for improving health care for children. The use of ordinal measures of

medical home provide a more straightforward view of the overall impact of increasing numbers

of elements of a medical home, or what even might be considered a “dose response” for degree

of medical home-ness.

Continuous scores are similar to ordinal measures in that both provide a view of the

overall impact of moving closer to having a medical home and the wider range of possible values

may provide a better estimate of incremental enhancements to the health care delivery system for

- 54 -

children. Continuous measures offer other analytic options not possible with categorical data. To

be most effective, however, it is necessary to standardize the point values in some meaningful

way in order to help distinguish the policy and performance relevant differences between scores

of 50 points and 70 points.

5.2 Differential weighting of scoring components

In the analytic approaches discussed thus far, all data elements corresponding to

characteristics of the medical home concept are given equal weight in the scoring process.

Implicitly though, available data elements are weighted more heavily than the characteristics that

are not measured at all. In addition, a strong differential exists in terms of the level of children’s

need for the different types of care represented in the medical home model. As shown in Table 7

and discussed in depth throughout the scoring sections, only a minority of children can be

expected to meet the inclusion criteria for every subcomponent of medical home measured

through the surveys addressed in this manual. Fewer needs for care translate into meeting the

inclusion criteria for fewer sub-component scores. At the individual child-level, the fewer sub-

component scores available means each score will make a correspondingly larger contribution to

the overall medical home composite result for that child. Conversely, the more sub-components

scores available for a child, the less weight any specific score will carry when calculating the

overall medical home composite for that individual. Given these scenarios, it is reasonable to

contemplate in a research application whether the sub-components of medical home measured

through the NS-CSHCN and NSCH surveys should all be given equal weight or whether some

aspects are of lesser or greater importance and should be weighted accordingly.

Further theoretical and empirical work is needed to examine the implications of

differentially weighting schemes for certain components of the medical home concept as well as

differentially weighting specific sub-component characteristics within each component..

Researchers interested in developing such methods will need to carefully examine the resulting

overall prevalence estimates and justify the conceptual grounds for the differential weighting

scheme applied. More work is required to arrive at sound theoretical approaches and policy

relevant rationale for appropriate differential weighting of components for purposes of creating

overall composite measures of medical home.

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References 1. Bethell, CD, Read, D. Strategy for assessing access to a medical home for CSHCN: Report

to the federal Maternal and Child Health Bureau. The Child and Adolescent Health Measurement Initiative; 2002. Contract #01-MCHB-69A.

2. Bethell, CD, Read, D. Evaluation of medical home measurement in the National Survey of Children’s Health: Report to the National Center for Health Statistics of the Centers for Disease Control and Prevention. The Child and Adolescent Health Measurement Initiative; 2003. Contract #0000258314, req. 20020814.

3. Bethell CD, Read D, Brockwood K. Using existing p-based data sets to measure the American Academy of Pediatrics definition of medical home for all children and children with special health care needs. Pediatrics. 2004; 113:1529-1537.

4. Cooley, WC, McAllister, JW, Sherrieb, K, Clarke RE. The Medical Home Index: development and validation of a new practice-level measure of implementation of the Medical Home model. Ambulatory Pediatrics. 2004; 4(2);192.

5. National Center for Health Statistics. National survey of children with special health care

needs, 2005–2006. Survey instrument and public use data files available online at: http://www.cdc.gov/nchs/slaits.htm

6. National Center for Health Statistics. National survey of children with special health care needs, 2001. Survey instrument and public use data files available online at: http://www.cdc.gov/nchs/slaits.htm

7. National Center for Health Statistics. National survey of children’s health, 2003. Survey instrument and public use data files available online at: http://www.cdc.gov/nchs/slaits.htm

8. American Academy of Pediatrics, Ad Hoc Task Force on Definition of the Medical Home. The medical home. Pediatrics. 1992; 90:774.

9. American Academy of Pediatrics, Medical Home Initiatives for Children with Special Health Care Needs Project Advisory Committee. Policy statement: the medical home. Pediatrics. 2002; 110:184-186.

10. Health Resources and Services Administration. National Agenda for Children with Special Health Care Needs: Achieving the Goals 2000. Washington, DC. 1997.

11. U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Title V Block Grant Program. Guidance and Forms for the Title V Application/Annual Report. 2005. Available online at: ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf.

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ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

- 57 -

12. Sia C, Tonniges TF, Osterhus E, Taba S. History of the Medical Home Concept. Pediatrics. 2004;113:1473-1478.

13. McPherson M, Weissman G, Strickland BB, van Dyck PC, Blumberg SJ, Newacheck PW. Implementing community-based systems of services for children and youth with special health care needs: how well are we doing? Pediatrics. 2004; 113(5):1538-1544.

14. U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics. Progress toward Implementing Community-Based Systems of Services for Children with Special Health Care Needs. Washington, DC. 2003.

15. U.S. Dept of Health and Human Services. Healthy People 2010 (Conference Edition.

Washington, DC. 2000.

APPENDIX A-1

2001 NATIONAL SURVEY OF CHILDREN WITH SPECIAL HEALTH CARE NEEDS

APPENDIX A_1: SAS User Resources

Programming Code and Other Resources for Medical Home Measurement

APPENDIX A-1

National Survey of Children with Special Health Care Needs (NS-CSHCN) Weighted estimates* for Medical Home composite measure, the five sub-component scores

and associated interim variables

2001 NS-CSHCN

2005/06 NS-CSHCN

% CSHCN ages 0-17*

% CSHCN ages 0-17* NOTES*

Meet overall criteria for having a Medical Home: 52.6 47.1

ESTABLISHED RELATIONSHIP WITH A SPECIFIC PROVIDER 1) Child has a “personal doctor or nurse”

89.0

93.5

1) Revised question wording used in 2005/06

ACCESSIBLE -- -- --

FAMILY CENTERED 2) Child’s doctors and other health providers do each of the

following: a. Usually or always spend enough time with child and parent b. Usually or always listen carefully to child and parent c. Usually or always sensitive to family’s values and customs d. Usually or always provide needed information e Usually or always make family feel like a partner in child’s care AND f. IF needed, interpreter services are usually or always available

64.2

80.0 84.5 82.2 77.4 82.2

--

62.4

74.7 84.3 84.4 78.9 83.2

0.8

f. New question on interpreter services added in 2005/06; only asked for households where primary language is not English

CONTINUOUS -- --

COMPREHENSIVE 3) IF needed, no problems obtaining referrals

a. Needed referral during past 12 months

4) Have usual source(s) for both sick and well care a. Child has a usual source for sick care b. Child has a usual source for preventive care

38.8 49.6

90.5 90.6 98.8

26.0 33.0

92.9 94.3 97.1

3) Significant changes were made in 2005/06 to the question wording, placement, and skip patterns use to assess problems obtaining needed referrals

COORDINATED 5) IF needed, gets effective care coordination

a. Needed and received professional help with care coordination b. IF needed care coordination, excellent communication btw doctors c. IF needed care coordination, doctor communication with school or other programs the child attends is excellent

d. Needed and usually got extra help with care coordination e. IF needed, very satisfied with communication btw doctors f. IF needed, very satisfied with how doctors communicate with school or other programs the child attends

4.5 9.5 5.1 3.0

-- -- --

46.0 -- -- --

30.4 41.8 14.1

5) Significant changes were made in 2005/06 in the content, wording, placement, and skip patterns of the questions used to assess effective care coordination

COMPASSIONATE Assessed under the Family Centered Care component†

CULTURALLY EFFECTIVE Assessed under the Family Centered Care component†

* All estimated percentages are weighted to represent the U.S. non-institutionalized population of CSHCN ages 0-17 years † Questions assessing these concepts are combined under the Family Centered Care component for scoring purposes. -- Not assessed by the survey.

- 53 -

APPENDIX A-1


SAS Medical Home

scoring program

APPENDIX A-1

- 57 -

Measuring Medical Home using Data Elements from the 2001 National Survey of Children with Special Health Care Needs(NS-CSHCN)

SAS scoring program variable names for the five sub-component scores and associated interim variables used to derive the Medical Home composite measure

2001 NS-CSHCN

SAS Variable names

Survey items or interim variables used to construct

Meet overall criteria for having a Medical Home: MH_COMP [PDN; FAMCENT; NOREFPRB; USUAL; CARECOOR]


PDN

[C4Q02a]

ACCESSIBLE -- --

FAMILY CENTERED 2) Child’s doctors and other health providers do each of the following:

a. Usually or always spend enough time with child and parent b. Usually or always listen carefully to child and parent c. Usually or always sensitive to family’s values and customs d. Usually or always provide needed information e Usually or always make family feel like a partner in child’s care

FAMCENT

TIME LISTEN SENSITV INFO PARTNER

[TIME; LISTEN; SENSITV;INFO; PARTNER]

C6q02 C6q03 C6q04 C6q05 C6q06

CONTINUOUS -- --

COMPREHENSIVE 3) IF needed, no problems needed obtaining referrals

4) Usual source(s) for both sick and well care

a. Child has a usual source for sick care b. Child has a usual source for preventive care

NOREFPRB

USUAL

SICK WELL

[C4Q07; C4Q05_02]

[SICK; WELL]

C4q0a; C4q0b C4q01; C4q02, C4q0b

COORDINATED 5) Gets effective care coordination when needed

a. Needed and usually got extra help w/ care coordination b. IF needed, very satisfied with communication btw doctors c. IF needed, very satisfied with how doctors communicate with school or other programs the child attends

CARECOOR

COORRCV DOCCOMM OTHCOMM

[COORRCV; DOCCOMM; OTHCOMM] C4q06_0a; C4q6x0aa C4q06_0a; C5q02; C5q05 C4q06_0a; C5q02; C5q06



-- Not assessed by the survey.

APPENDIX A-1

MEDICAL HOME Composite measure

Children with special health care needs (CSHCN) receiving ongoing, coordinated and comprehensive care within a medical home

Survey Items Used C4Q02a, C6Q02 – C6Q06, C4Q07, C4Q05_02, C4Q0a, C4Q0b, C4Q01, C4Q02, C4Q06_0a, C4Q6X0aa, C5Q02, C5Q05, C5Q06

Children with special health care needs (CSHCN) meeting scoring criteria for having a Medical Home

Numerator

Children with special health care needs (CSHCN) ages 0–17 years Denominator

Percent of CSHCN ages 0–17 who have a primary care provider (e.g. personal doctor or nurse) AND usual sources for both sick and preventive care AND consistently get family-centered care from their doctors and other health care providers AND, if needed, receive effective care coordination AND, if needed, no problems getting referrals

Description

Notes for Data-Users

The medical home composite measure and its sub-components are designed to operationalize the American Academy of Pediatrics (AAP) definition of “medical home”. According to this definition, children ideally should have access to “accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective care within a medical home.”

The presence of medical home for CSHCN is one of the six performance measures or outcomes that states submit as part of the Title V Block Grant reporting requirements. The final medical home composite score used to measure this outcome is derived from the five sub-components constructed below.

SAS Code and Annotation

Formats

**** The following program sets the formats for the medical home sub-components, associated interim variables, and the overall medical home composite measure created by the SAS scoring program proc format library = library name; value pdn /*PDN sub-component*/ 0 = "Do not have a personal dr or nurse" 1 = "Yes, have a personal dr or nurse"; value family /*interim variable*/ 0 = "Sometimes/Never" 1 = "Usually/Always" 99 = "DK/Ref/Missing to item or number of dr visits"; value famcent /*FCC sub-component*/ 0 = "Does NOT have fcc" 1 = "Yes, has fcc" 3 = "Legitimate skip"; value c4q07f /*interim variable*/ 0 = "Big or small problem" 1 = "No problems" 4 = "Ch did NOT need to see a specialist"

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APPENDIX A-1

5 = "No need to get referrals" 999 = "DK/Ref/Missing"; value norefprb /*Getting referrals sub-component*/ 0 = "Needed referrals, problems getting" 1 = "Needed referrals, no problems" 3 = "Legitimate skip"; value yn /*interim variable*/ 0 = "No" 1 = "Yes"; value usual /*Usual source care care sub-component*/ 0 = "Does not have usual sources of care" 1 = "DOES have usual sources for sick and well care"; value coorrcv /*interim variable*/ 0 = "Needed, did not get all prof care coor" 1 = "Needed & got all prof care coor" 3 = "Did not need prof care coor" 99 = "DK/Ref/Missing to one or both" 999 = "DK/Ref/Missing"; value comm /*interim variables for care coor communication*/ 1 = "Excellent/Very Good" 2 = "Good/Fair/Poor" 3 = "Legitimate skip" 6 = "Communication not needed" 999 = "DK/Ref"; value carecoor /*Effect care coor sub-component*/ 1 = "Has effective care coor" 0 = "Does not have effective care coor" 3 = "Legitimate skip -- not needed or needed/never helped"; value medhome /*Composite meas*/ 1 = "Care MEETS medical home criteria" 2 = "Care DOES NOT meet medical home criteria"; RUN; Scoring program

******************************Personal doctor or nurse (PDN) Component***************************** /**PERSONAL DOCTOR OR NURSE (PDN)COMPONENT**/ /***"Personal Doctor or Nurse" sub-component of MEDICAL HOME componsite measure***/ pdn = c4q02a; if c4q02a in (6,7) then pdn = .; label pdn = "Personal doctor or nurse sub-component of MEDICAL HOME composite measure"; ******************************* Family Centered Care Component **************************************** /**FAMILY CENTERED CARE sub-component of MEDICAL HOME composite measure**/ /**** STEP 1: The following code sets up the interim variables used to derive the overall score for the "Effective Care Coordination" sub-component of the MEDICAL HOME composite measure**/ time = .; if c6q02 in (1,2) then time = 0; if c6q02 in (3,4) then time = 1; if c6q01r = 996 or c6q01r = 997 then time = .; label time = "How often drs spent enough time";

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APPENDIX A-1

listen = .; if c6q03 in (1,2) then listen = 0; if c6q03 in (3,4) then listen = 1; if c6q01r = 996 or c6q01r = 997 then listen = .; label listen = "How often drs listened carefully"; sensitv = .; if c6q04 in (1,2) then sensitv = 0; if c6q04 in (3,4) then sensitv = 1; if c6q01r = 996 or c6q01r = 997 then sensitv = .; label sensitv = "How often drs sensitive to families values/customs"; info = .; if c6q05 in (1,2) then info = 0; if c6q05 in (3,4) then info = 1; if c6q01r = 996 or c6q01r = 997 then info = .; label info = "How often got enough info from dr re: medical problems"; partner = .; if c6q06 in (1,2) then partner = 0; if c6q06 in (3,4) then partner = 1; if c6q01r = 996 or c6q01r = 997 then partner = .; label partner = "How drs helped parents feel like partners"; /***STEP 2: Construct "Family Centered Care" sub-component of MEDICAL HOME composite measure***/ famcent = .; if time eq 0 or listen eq 0 or sensitv eq 0 or info eq 0 or partner eq 0 then famcent = 0; if time eq 1 and listen eq 1 and sensitv eq 1 and info eq 1 and partner eq 1 then famcent = 1; if time = . or listen = . or sensitv = . or info = . or partner = . then famcent = .; if time eq . or listen eq . or sensitv eq . or info eq . or partner eq . then famcent = .; if c6q01r = 0 then famcent = 3; label famcent = "Family Centered Care sub-component of MEDICAL HOME composite measure"; *************************************Comprehensive Care Component ************************************ /**GETTING NEEDED REFERRALS sub-component of MEDICAL HOME composite measure**/ /***STEP 1: The following code sets up the interim variable used to derive the overall score for the "No Problems Getting Needed Referrals" sub-component of the MEDICAL HOME composite measure***/ r_c4q07 = .; if c4q07 = 3 then r_c4q07 = 1; if c4q07 = 4 then r_c4q07 = 4; if c4q07 = 5 then r_c4q07 = 5; if c4q07 in (1,2) then r_c4q07 = 0; if c4q07 in (6,7) then r_c4q07 = .; label r_c4q07 = "Problems getting referral to specialist"; /***STEP 2: Construct "No Problems Getting Needed Referrals" sub-component of MEDICAL HOME composite measure**/ norefprb = .; if c4q05_02 = 1 and r_c4q07 = 0 then norefprb = 0; if c4q05_02 = 1 and r_c4q07 = 1 then norefprb = 1; if c4q05_02 = 0 or r_c4q07 = 4 or r_c4q07 = 5 then norefprb = 3; if c4q05_02 = 6 or c4q05_02 = 7 then norefprb = .; label norefprb = "Getting needed referrals sub-component of MEDICAL HOME composite measure";

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APPENDIX A-1

/**USUAL SOURCES for SICK and WELL CARE sub-component of MEDICAL HOME composite measure**/ /***STEP 1: The following code sets up the interim variables used to derive the overall score for the "Usual Sources for Sick and Well Care" sub-component of the MEDICAL HOME composite measure***/ sick = .; if (c4q0a = 1 or c4q0a = 3) and (c4q0b = 1 or c4q0b = 3 or c4q0b = 4 or c4q0b = 5 or c4q0b = 6 or c4q0b = 8) then sick = 1; if (c4q0a = 2) or (c4q0b = 2 or c4q0b = 7) then sick = 0; label sick = "Child has usual place for sick care"; well = .; if (c4q01 = 1) or (c4q02 = 2 or c4q02 = 4 or c4q02 = 5 or c4q02 = 6 or c4q02 = 7 or c4q02 = 9) then well = 1; if c4q02 = 1 or c4q02 = 3 or c4q02 = 8 or c4q02 = 10 then well = 0; if c4q02 = 96 or c4q02 = 97 then well = .; if c4q01 = 6 or c4q01 = 7 then well = .; if c4q01 = 1 and (c4q0b = 2 or c4q0b = 7) then well = 0; label well = "Child has usual place for well care"; /***STEP 2: Construct "Usual Sources for Sick and Well Care" sub-component of MEDICAL HOME composite measure***/ usual = .; usual = .; if sick = 1 and well = 1 then usual = 1; if sick = 0 or well = 0 then usual = 0; if well = . or sick = . then usual = .; label usual = "Usual sources for sick and well care sub-component of MEDICAL HOME composite measure"; ***********************************Coordinated Care Component **************************************** /**EFFECTIVE CARE COORDINATION sub-component of MEDICAL HOME composite measure**/ /***STEP 1: The following code sets up the interim variables used to derive the overal score for the "Effective Care Coordination" sub-component of the MEDICAL HOME composite measure***/ coorrcv = 99; if c4q6x0aa = 1 then coorrcv = 1; if c4q6x0aa = 0 then coorrcv = 0; if c4q06_0a = 0 then coorrcv = 3; label coorrcv = "Received NEEDED professional care coordination"; r_c5q05 = .; if c5q05 eq 6 then r_c5q05 = 6; if c5q05 eq 96 then r_c5q05 = 999; if c5q05 in (.M,.L,.A) then r_c5q05 = 999; if c5q05 in (1,2) then r_c5q05 = 1; if c5q05 in (3,4,5) then r_c5q05 = 2; doccomm = 999; if r_c5q05 = 1 then doccomm = 1; if r_c5q05 = 2 then doccomm = 2; if r_c5q05 = 6 then doccomm = 3; if c4q06_0a = 0 then doccomm = 3; if c5q02 = 1 then doccomm = 3; label doccomm = "Level of communication btw child's doctors";

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APPENDIX A-1

r_c5q06 = 999; if c5q06 eq 6 then r_c5q06 = 6; if c5q06 eq 96 then r_c5q06 = 999; if c5q06 in (.M,.L,.A) then r_c5q06 = 999; if c5q06 in (1,2) then r_c5q06 = 1; if c5q06 in (3,4,5) then r_c5q06 = 2; label r_c5q06 = "Recoded level of dr communication with other services"; othcom_1 = 999; if r_c5q06 = 1 then othcom_1 = 1; if r_c5q06 = 2 then othcom_1 = 2; othcom_2 = 999; if c4q06_0a = 0 then othcom_2 = 3; if c4q06_0a = 1 and othcom_1 = 1 then othcom_2 = 1; if c4q06_0a = 1 and othcom_1 = 2 then othcom_2 = 2; if c4q06_0a = 1 and c5q02 = 1 then othcom_2 = 3; if c4q06_0a = 1 and c5q02 >= 6 then othcom_2 = 999; othcomm = 999; if r_c5q06 = 1 and othcom_2 = 1 then othcomm = 1; if r_c5q06 = 1 and othcom_2 = 3 then othcomm = 3; if r_c5q06 = 2 and othcom_2 = 2 then othcomm = 2; if r_c5q06 = 2 and othcom_2 = 3 then othcomm = 3; if r_c5q06 = 6 and othcom_2 =3 then othcomm = 3; if r_c5q06 = 6 and othcom_2 =999 then othcomm = 3; if r_c5q06 = 999 and othcom_2 =3 then othcomm = 3; label othcomm = "Level of dr communication with other services"; /***STEP 2: Construct the "EFFECTIVE CARE COORDINATION" sub-component of the MEDICAL HOME composite measure***/ carecoor = 3; if coorrcv = 1 and (doccomm = 1 or doccomm = 3) and (othcomm = 1 or othcomm = 3) then carecoor = 1; if coorrcv = 0 or doccomm = 2 or othcomm = 2 then carecoor = 0; if coorrcv = 99 or doccomm = 999 or othcomm = 999 then carecoor = .; label carecoor = "Effective care coordination sub-component of the MEDICAL HOME composite measure"; ******************************** MEDICAL HOME COMPOSITE MEASURE************************************ /***The following code uses the five sub-components created above to derive the MEDICAL HOME composite measure using the ON EVERY scoring approach***/ mh_comp = .; if (pdn = 1 and usual = 1) and (carecoor = 1 or carecoor = 3) and (norefprb = 1 or norefprb = 3) and (famcent = 1 or famcent = 3) then mh_comp = 1; if (pdn = 0) or (usual = 0) or (carecoor = 0) or (norefprb = 0) or (famcent = 0) then mh_comp = 0; if pdn = . or usual = . or famcent = . or norefprb = . or carecoor = . then mh_comp = .; if mh_comp = 0 then mh_comp = 2; label mh_comp = "% of CSHCN receiving coordinated, ongoing,comprehensive care within a medical home"; RUN;

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APPENDIX A-1

- 64 -

PROC FREQ DATA=dataset name; FORMAT time family.

listen family. sensitv family. info family. partner family. pdn PDN.

famcent famcent. r_c4q07 c4q07f.

norefprb norefprb. sick well yn. usual usual. coorrcv coorrcv. r_c5q05 r_c5q06 othcom_1 othcom_2 othcomm doccomm comm. carecoor carecoor. mh_comp medhome; TABLES pdn time listen sensitv info partner famcent r_c4q07 norefprb sick well usual coorrcv r_c5q05 doccomm r_c5q06 othcom_1 othcom_2 othcomm carecoor mh_comp; RUN;

APPENDIX A-1


Unweighted frequency distributions for the

Medical Home sub-components, related interim variables and composite measure generated by the

SAS scoring program

APPENDIX A-1

Personal Doctor or Nurse (PDN) Component **PDN sub-component score (PDN)

Personal doctor or nurse sub-component of MEDICAL HOME composite measure Cumulative Cumulative pdn Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Do not have a personal dr or nurse 3927 10.14 3927 10.14 Yes, have a personal dr or nurse 34784 89.86 38711 100.00

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Family-Centered Care Component **Interim variables for Family-Centered Care sub-component

Frequency Missing = 155

How often drs spent enough time Cumulative Cumulative time Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Sometimes/Never 5391 14.65 5391 14.65 Usually/Always 31408 85.35 36799 100.00 Frequency Missing = 2067 How often drs listened carefully Cumulative Cumulative listen Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Sometimes/Never 4015 10.89 4015 10.89 Usually/Always 32857 89.11 36872 100.00 Frequency Missing = 1994

APPENDIX A-1

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Legitimate skip 1404 3.75 37422 100.00 Frequency Missing = 1444

How often drs sensitive to families values/customs Cumulative Cumulative sensitv Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Sometimes/Never 4258 11.69 4258 11.69 Usually/Always 32167 88.31 36425 100.00 Frequency Missing = 2441

How often got enough info from dr re: medical problems Cumulative Cumulative info Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Sometimes/Never 6497 17.69 6497 17.69 Usually/Always 30237 82.31 36734 100.00 Frequency Missing = 2132

How drs helped parents feel like partners Cumulative Cumulative partner Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Sometimes/Never 4633 12.58 4633 12.58 Usually/Always 32204 87.42 36837 100.00

**Family-Centered Care sub-component score (FAMCENT)

Family Centered Care sub-component of MEDICAL HOME composite measure Cumulative Cumulative famcent Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Does NOT have fcc 11031 29.48 11031 29.48 Yes, has fcc 24987 66.77 36018 96.25

APPENDIX A-1

Comprehensive Care Component **Interim variables for No Problems Getting Needed Referrals sub-component

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** No Problems Getting Needed Referrals sub-component score (NOREFPRB)

**Interim variables Usual Sources for Sick and Well Care sub-component

Getting needed referrals sub-component of MEDICAL HOME composite measure Cumulative Cumulative norefprb Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Needed referrals, problems getting 4026 10.40 4026 10.40 Needed referrals, no problems 16016 41.37 20042 51.77 Legitimate skip 18670 48.23 38712 100.00 Frequency Missing = 154



Problems getting referral to specialist Cumulative Cumulative r_c4q07 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Big or small problem 5676 14.64 5676 14.64 No problems 29787 76.83 35463 91.47 Ch did NOT need 2210 5.70 37673 97.17 to see a specialist No need to get referrals 1098 2.83 38771 100.00

Child has usual place for sick care Cumulative Cumulative sick Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ No 3661 9.45 3661 9.45 Yes 35083 90.55 38744 100.00

APPENDIX A-1

Child has usual place for well care Cumulative Cumulative well Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ No 369 0.95 369 0.95 Yes 38368 99.05 38737 100.00 Frequency Missing = 129

**Usual Sources for Sick and Well Care sub-component score (USUAL)

Usual sources for sick and well care sub-component of MEDICAL HOME composite measure Cumulative Cumulative usual Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Does not have usual sources of care 3664 9.49 3664 9.49 DOES have usual sources care 34964 90.51 38628 100.00 for sick and well Frequency Missing = 238

Coordinated Care Component **Interim variables Effective Care Coordination sub-component

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Received NEEDED professional care coordination Cumulative Cumulative coorrcv Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Needed, did not get all prof care coor 779 2.00 779 2.00 Needed & got all prof care coor 3748 9.64 4527 11.65 Did not need prof care coor 34160 87.89 38687 99.54 DK/Ref/Missing to one or both 179 0.46 38866 100.00

APPENDIX A-1

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DK/Ref 237 0.61 38866 100.00

DK/Ref 970 2.50 38866 100.00

DK/Ref 9397 24.18 38866 100.00

r_c5q05 Cumulative Cumulative r_c5q05 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Excellent/Very Good 1970 5.07 1970 5.07 Good/Fair/Poor 1740 4.48 3710 9.55 Communication not needed 66 0.17 3776 9.72 DK/Ref 35090 90.28 38866 100.00

Level of communication btw child's doctors Cumulative Cumulative doccomm Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Excellent/Very Good 1970 5.07 1970 5.07 Good/Fair/Poor 1740 4.48 3710 9.55 Legitimate skip 34919 89.84 38629 99.39

Recoded level of dr communication with other services Cumulative Cumulative r_c5q06 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Excellent/Very Good 15706 40.41 15706 40.41 Good/Fair/Poor 13763 35.41 29469 75.82 Communication not needed 8427 21.68 37896 97.50

othcom_1 Cumulative Cumulative othcom_1 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Excellent/Very Good 15706 40.41 15706 40.41 Good/Fair/Poor 13763 35.41 29469 75.82

APPENDIX A-1

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othcom_2 Cumulative Cumulative othcom_2 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Excellent/Very Good 1203 3.10 1203 3.10 Good/Fair/Poor 1993 5.13 3196 8.22 Legitimate skip 34852 89.67 38048 97.90 DK/Ref 818 2.10 38866 100.00

Level of dr communication with other services Cumulative Cumulative othcomm Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Excellent/Very Good 1203 3.10 1203 3.10 Good/Fair/Poor 1993 5.13 3196 8.22 Legitimate skip 35409 91.11 38605 99.33 DK/Ref 261 0.67 38866 100.00

**Effective Care Coordination sub-component score (CARECOOR)

Effective care coordination sub-component of the MEDICAL HOME composite measure Cumulative Cumulative carecoor Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Does not have effective care coor 2665 6.92 2665 6.92 Has effective care coor 1691 4.39 4356 11.31 Legitimate skip/ 34160 88.69 38516 100.00 not needed or needed/never helped

APPENDIX A-1

- 73 -

Medical Home Composite Measure **Medical Home Composite Measure score (MH_COMP) % of CSHCN receiving coordinated, ongoing, comprehensive care within a medical home Cumulative Cumulative mh_comp Frequency Percent Frequency PercentƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒCare MEETS medical home criteria 20019 54.53 20019 54.53Care DOES NOT meet medical home criteria 16691 45.47 36710 100.00 Frequency Missing = 2156

APPENDIX A-1


Full text and response options for questions used to assess Medical Home

APPENDIX A-1

2001 NS-CSHCN Text and response options for questions used to assess Medical Home

(Listed in the order asked in the survey)

QUESTIONS RESPONSE CATEGORIES AND SKIP PATTERNS

SECTION 4: ACCESS TO CARE: UTILIZATION AND UNMET NEEDS

C4q0a Is there a place that (S.C.) USUALLY goes when (he/she) is sick or you need advice about (his/her) health? If Yes to C4q0a:

C4q0b Is it a doctor’s office, emergency room, hospital outpatient department, clinic, or some other place?

(1) YES (2) THERE IS NO PLACE [SKIP TO C4Q02] (3) THERE IS MORE THAN ONE PLACE (6) DON’T KNOW [SKIP TO C4Q02] (7) REFUSED [SKIP TO C4Q02]

(01) DOCTOR’S OFFICE [SKIP TO C4Q01] (02) HOSPITAL EMERGENCY ROOM [SKIP TO C4Q01] (03) HOSPITAL OUTPATIENT DEPARTMENT [SKIP TO C4Q01] (04) CLINIC OR HEALTH CENTER [SKIP TO C4Q01] (05) SCHOOL (NURSE’S OFFICE, ATHLETIC TRAINER’S OFFICE, ETC) [SKIP TO C4Q01] (06) SOME OTHER PLACE [SKIP TO C4Q01] (07) DOES NOT GO TO ONE PLACE MOST OFTEN

[SKIP TO C4Q02] (96) DON’T KNOW [SKIP TO C4Q02] (97) REFUSED [SKIP TO C4Q02]

C4q01 Is the [place selected in C4q0b] that (S.C.) goes to when (he/she) is sick the same place (S.C.) usually goes for routine preventive care?

(1) YES [SKIP TO C4Q02A] (2) NO [SKIP TO C4Q02] (6) DON’T KNOW [SKIP TO C4Q02A] (7) REFUSED [SKIP TO C4Q02A]

C4q02 What kind of place does (S.C.) go to most often when (he/she) needs routine preventive care?

(01) DOES NOT GET PREVENTIVE CARE ANYWHERE (02) DOCTOR’S OFFICE (03) HOSPITAL EMERGENCY ROOM (04) HOSPITAL OUTPATIENT DEPARTMENT (05) CLINIC OR HEALTH CENTER (06) SCHOOL (NURSE’S OFFICE, ATHLETIC TRAINER’S OFFICE, ETC) (07) SOME OTHER PLACE [SKIP TO C4Q02_1] (08) DOES NOT GO TO ONE PLACE MOST OFTEN (96) DON’T KNOW (97) REFUSED

C4q02a A personal doctor or nurse is the health provider who knows (S.C.) best. Do you have ONE person that you think of as (S.C.)’s personal doctor or nurse?

(1) YES (2) NO [SKIP TO C4Q03] (6) DON’T KNOW [SKIP TO C4Q03] (7) REFUSED [SKIP TO C4Q03]

- 77 -

APPENDIX A_1




C4q05_02 During the past 12 months, was there any time when (“S” CHILD) needed care from a specialty doctor?

(1) YES (2) NO [SKIP TO C4Q05_03] (6) DON’T KNOW [SKIP TO C4Q05_03] (7) REFUSED [SKIP TO C4Q05_03]

C4q06_0a During the past 12 months, was there any time when you or other family members needed professional care coordination among different health care providers and services that the child uses? If Yes to C4q06_0a:

C4q06x0aa Did you or your family receive all the professional care coordination that was needed?

(1) YES (2) NO [SKIP TO C4Q06_01] (6) DON’T KNOW [SKIP TO C4Q06_01] (7) REFUSED [[SKIP TO C4Q06_01]

(1) YES (2) NO (6) DON’T KNOW (7) REFUSED

C4q07 In the past 12 months, how much of a problem, if any, was it to get a referral to a specialist that your child needed to see?

(1) Big problem (2) Small problem (3) Not a problem (4) Child did not go to see a specialist in the past 12 months (5) DID NOT NEED REFERRALS (6) DON’T KNOW (7) REFUSED

SECTION 5: CARE COORDINATION

C5q02 Earlier you told me that you or other family members needed professional assistance coordinating (“S” CHILD)’s care. How often does a professional help you coordinate (“S” CHILD)’s care among (his/her) different providers and services?

(1) Never [SKIP TO C5q06] (2) Sometimes (3) Usually (4) Always (6) DON’T KNOW [SKIP TO C5q06] (7) REFUSED [SKIP TO C5q06]

C5q05 How well do you think (“S” CHILD)’s doctors and other health care providers communicate with each other about (“S” CHILD)’s care?

(01) Excellent (02) Very Good (03) Good (04) Fair or (05) Poor (06) COMMUNICATION NOT NEEDED (96) DON’T KNOW (97) REFUSED

- 78 -

APPENDIX A-1

- 79 -




C5q06 How well do you think (“S” CHILD) ’s doctors and other health care providers communicate with (his/her) school, early intervention program, child care providers, or vocational rehabilitation program?

(01) Excellent (02) Very Good (03) Good (04) Fair or (05) Poor (06) COMMUNICATION NOT NEEDED (96) DON’T KNOW

(97) REFUSED

SECTION 6: SATISFACTION WITH CARE

C6q02 During the past 12 months, how often did (S.C.)’s doctors and other health care providers spend enough time with (him/her)?

(1) Never (2) Sometimes (3) Usually (4) Always (6) DON’T KNOW (7) REFUSED

C6q03 During the past 12 months, how often did (S.C.)’s doctors and other health care providers listen carefully to you?


C6q04 When (S.C.) is seen by doctors or other health care providers, how often are they sensitive to your family’s values and customs?


C6q05 During the past 12 months, how often did you get the specific information you needed from (S.C.)’s doctors and other health care providers?


C6q06 During the past 12 months, how often did (S.C.)’s doctors or other health care providers help you feel like a partner in (his/her) care?


APPENDIX A-2


APPENDIX A_2: SPSS User Resources


APPENDIX A-2



2001 NS-CSHCN

2005/06 NS-CSHCN

% CSHCN ages 0-17*




89.0

93.5


ACCESSIBLE -- -- --


a. Usually or always spend enough time with child and parent b. Usually or always listen carefully to child and parent c. Usually or always sensitive to family’s values and customs d. Usually or always provide needed information e Usually or always make family feel like a partner in child’s care AND f. IF needed, interpreter services are usually or always available

64.2

80.0 84.5 82.2 77.4 82.2

--

62.4

74.7 84.3 84.4 78.9 83.2

0.8


CONTINUOUS -- --




38.8 49.6

90.5 90.6 98.8

26.0 33.0

92.9 94.3 97.1





4.5 9.5 5.1 3.0

-- -- --

46.0 -- -- --

30.4 41.8 14.1


Assessed under the Family Centered Care component† COMPASSIONATE

Assessed under the Family Centered Care component† CULTURALLY EFFECTIVE


- 83 -

APPENDIX A-2


SPSS Medical Home scoring program

APPENDIX A-2

- 87 -

Measuring Medical Home using Data Elements from the 2001 National Survey of Children with Special Health Care Needs(NS-CSHCN)

SPSS scoring program variable names for the five sub-component scores and associated interim variables used to derive the Medical Home composite measure

2001 NS-CSHCN

SPSS Variable names

Survey items or interim variables used to construct


ESTABLISHED RELATIONSHIP WITH A SPECIFIC PROVIDER

1) Child has a “personal doctor or nurse”

PDN

[C4Q02a]

ACCESSIBLE -- --


a. Usually or always spend enough time with child and parent b. Usually or always listen carefully to child and parent c. Usually or always sensitive to family’s values and customs d. Usually or always provide needed information e Usually or always make family feel like a partner in child’s care

FAMCENT

TIME LISTEN SENSITIV INFO PARTNER

[TIME; LISTEN; SENSITIV;INFO; PARTNER]

C6q02 C6q03 C6q04 C6q05 C6q06

CONTINUOUS -- --

COMPREHENSIVE 3) IF needed, no problems needed obtaining referrals

4) Usual source(s) for both sick and well care a. Child has a usual source for sick care b. Child has a usual source for preventive care

NOREFPRB

USUAL SICK WELL

[C4Q07; C4Q05_02]

[SICK; WELL]

C4q0a; C4q0b C4q01; C4q02, C4q0b


a. Needed and usually got extra help w/ care coordination b. IF needed, very satisfied with communication btw doctors c. IF needed, very satisfied with how doctors communicate with school or other programs the child attends

CARECOOR


[COORRCV; DOCCOMM; OTHCOMM] C4q06_0a; C4q6x0aa C4q06_0a; C5q02; C5q05 C4q06_0a; C5q02; C5q06




APPENDIX A-2

MEDICAL HOME Composite measure


#2 CSHCN will receive coordinated, ongoing, comprehensive care within a medical home

C4Q02a, C6Q02 – C6Q06, C4Q07, C4Q05_02, C4Q0a, C4Q0b, C4Q01, C4Q02, C4Q06_0a, C4Q6X0aa, C5Q02, C5Q05, C5Q06

Survey Items Used


Numerator


Description Percent of CSHCN ages 0–17 who have a primary care provider (e.g. personal doctor or nurse) AND usual sources for both sick and preventive care AND consistently get family-centered care from their doctors and other health care providers AND, if needed, receive effective care coordination AND, if needed, no problems getting referrals




SPSS Code and Annotation

***************************Personal doctor or nurse (PDN) Component *************************** ***PERSONAL DOCTOR or NURSE sub-component of MEDICAL HOME composite measure COMPUTE pdn = c4q02a. EXECUTE. VARIABLE LABEL pdn 'Personal doctor or nurse sub-component of MEDICAL HOME composite measure’. VALUE LABEL pdn 0 'Do not have a personal dr or nurse' 1 'Yes, have a personal dr or nurse'. *************************** Family Centered Care Component ********************************* *** FAMILY-CENTERED CARE sub-component of MEDICAL HOME composite measure ****** Step 1: The following syntax sets up the interim variables used to derive the overall score for "Family-Centered Care" sub-component of MEDICAL HOME composite measure

- 89 -

APPENDIX A-2

- 90 -

MISSING VALUES c6q01r (). EXECUTE. *COMPUTE time = 99. IF (c6q02 = 1 or c6q02 = 2) time = 0. IF (c6q02 = 3 or c6q02 = 4) time = 1. IF (c6q01r = 996 or c6q01r = 997) time = 99. EXECUTE. VARIABLE LABEL time 'How often drs spent enough time'. VALUE LABELS time 0 'Sometimes or never' 1 'Usually or always' 99 'DK/REF to item or # of dr visits'. *COMPUTE listen = 99. IF (c6q03 = 1 or c6q03 = 2) listen = 0. IF (c6q03 = 3 or c6q03 = 4) listen = 1. IF (c6q01r = 996 or c6q01r = 997) listen = 99. EXECUTE. VARIABLE LABEL listen 'How often drs listened carefully'. VALUE LABELS listen 0 'Sometimes or never' 1 'Usually or always' 99 'DK/REF to item or # of dr visits'. *COMPUTE sensitiv = 99. IF (c6q04 = 1 or c6q04 = 2) sensitiv = 0. IF (c6q04 = 3 or c6q04 = 4) sensitiv = 1. IF (c6q01r = 996 or c6q01r = 997) sensitiv = 99. EXECUTE. VARIABLE LABEL sensitiv 'How often drs sensitive to families values/customs'. VALUE LABELS sensitiv 0 'Sometimes or never' 1 'Usually or always' 99 'DK/REF to item or # of dr visits'. *COMPUTE info = 99. IF (c6q05 = 1 or c6q05 = 2) info =0. IF (c6q05 = 3 or c6q05 = 4) info = 1. IF (c6q01r = 996 or c6q01r = 997) info = 99. EXECUTE. VARIABLE LABEL info 'How often got enough info from dr re: medical problems'. VALUE LABELS info 0 'Sometimes or never' 1 'Usually or always' 99 'DK/REF to item or # of dr visits'. *COMPUTE partner = 99. IF (c6q06 = 1 or c6q06 = 2) partner = 0. IF (c6q06 = 3 or c6q06 = 4) partner = 1. IF (c6q01r = 996 or c6q01r = 997) partner = 99. EXECUTE. VARIABLE LABEL partner 'How often drs helped parents feel like partners'. VALUE LABELS partner

APPENDIX A-2

0 'Sometimes or never' 1 'Usually or always' 99 'DK/REF to item or # of dr visits'. ****** Step 2: Construct "Family-Centered Care" sub-component of MEDICAL HOME composite measure COMPUTE famcent = 99. IF (time = 0) or (listen = 0) or (sensitiv = 0) or (info = 0) or (partner = 0) famcent = 0. IF (time =1) and (listen =1) and (sensitiv =1) and (info =1) and (partner =1) famcent = 1. IF ((SYSMIS (time)) or (SYSMIS (listen)) or (SYSMIS (sensitiv)) or (SYSMIS (info)) or (SYSMIS (partner))) famcent = 99. IF (c6q01r = 0) famcent = 3. EXECUTE. VARIABLE LABEL famcent 'Family centered care sub-component of MEDICAL HOME composite measure'. VALUE LABEL famcent 0 'Does NOT have fcc' 1 'Yes, has fcc' 3 'Legitimate skip' 99 'DK/Ref to any item and/or # of dr visits'. RECODE famcent (1=1) (0=0) (3=3) (99=SYSMIS). EXECUTE. *************************************Comprehensive Care Component ************************************ *** GETTING NEEDED REFERRALS sub-component of MEDICAL HOME composite measure ****** Step 1: The following syntax sets up the interim variable used to derive the overall score for "No Problems Getting Needed Referrals" sub-component of MEDICAL HOME composite measure MISSING VALUES c4q07 c4q05_02 (). EXECUTE. RECODE c4q07 (3=1) (4=4) (5=5) (1 thru 2=0) (6 thru 7=999) INTO r_c4q07 . EXECUTE . VAR LABEL r_c4q07 'Problems getting referral to specialist'. VALUE LABEL r_c4q07 0 'Big or small problem' 1 'No problems' 4 'Ch did NOT need to see a specialist' 5 'No need to get referrals' 999 'DK/Ref/Missing'. ****** Step 2: Construct "No Problems Getting Needed Referrals " sub-component of MEDICAL HOME composite measure COMPUTE norefprb = 999. IF (c4q05_02 = 1) and (r_c4q07 = 0) norefprb = 0. IF (c4q05_02 = 1) and (r_c4q07 = 1) norefprb = 1. IF (c4q05_02 = 0) or (r_c4q07 = 4) or (r_c4q07 = 5) norefprb = 3.

- 91 -

APPENDIX A-2

- 92 -

IF (c4q05_02 = 6 or c4q05_02 = 7) norefprb = 999. EXECUTE. VARIABLE LABELS norefprb 'Getting needed referrals sub-component of MEDICAL HOME composite measure'. VALUE LABELS norefprb 0 'Needed referrals, problems getting' 1 'Needed referrals, no problems' 3 'Legitimate skip' 999 'DK/Ref/Missing'. RECODE norefprb (999=SYSMIS). ***USUAL SOURCES FOR SICK AND WELL CARE sub-component of MEDICAL HOME composite measure ****** Step 1: The following syntax sets up the interim variables used to derive the overall score for "Usual Sources for Sick and Well Care" sub-component of MEDICAL HOME composite measure COMPUTE sick = 99. IF ((c4q0a = 1) or (c4q0a = 3)) and ((c4q0b = 1 or c4q0b = 3 or c4q0b = 4 or c4q0b = 5 or c4q0b = 6 or c4q0b = 8)) sick = 1. IF (c4q0a = 2) or ((c4q0b = 2 or c4q0b = 7)) sick = 0. EXECUTE. RECODE sick (1=1) (0=0) (ELSE=SYSMIS). VARIABLE LABEL sick 'Ch. has usual place for sick care'. VALUE LABEL sick 0 'No' 1 'Yes'. COMPUTE well = 99. IF (c4q01 = 1) or ((c4q02 = 2 or c4q02 = 4 or c4q02 = 5 or c4q02 = 6 or c4q02 = 7 or c4q02 = 9)) well = 1. IF (c4q02 = 1 or c4q02 = 3 or c4q02 = 8 or c4q02 = 10) well = 0. IF (c4q02 = 96 or c4q02 = 97) well = 4. IF (c4q01 = 6 or c4q01 = 7) well = 4. IF ((c4q01 = 1) and (c4q0b = 2 or c4q0b = 7)) well = 0. EXECUTE. MISSING VALUES well (4). RECODE well (1=1) (0=0) (ELSE=SYSMIS) . EXECUTE . VARIABLE LABEL well 'Ch. has usual place for well care'. VALUE LABEL well 0 'No' 1 'Yes'. ****** Step 2: Construct "Usual Sources for Sick and Well Care " sub-component of MEDICAL HOME composite measure COMPUTE usual = 99. IF (sick = 1) and (well = 1) usual = 1. IF (sick = 0) or (well = 0 ) usual = 0. IF (SYSMIS (well)) or (SYSMIS (sick)) usual = 4. EXECUTE. MISSING VALUES usual (4).

APPENDIX A-2

RECODE usual (1=1) (0=0) (ELSE=SYSMIS) . EXECUTE . VARIABLE LABEL usual 'Usual sources for sick and well care sub-component of MEDICAL HOME composite measure’. VALUE LABEL usual 0 'Ch. does not have usual source of care' 1 'Ch. has usual source of care'. ***********************************Coordinated Care Component **************************************** ***EFFECTIVE CARE COORDINATION sub-component of MEDICAL HOME composite measure ****** Step 1: The following syntax sets up the interim variables used to derive the overall score for "Effective Care Coordination" sub-component of MEDICAL HOME composite measure COMPUTE coorrcv = 99. IF (c4q6x0aa = 1) coorrcv = 1. IF (c4q6x0aa = 0) coorrcv = 0. IF (c4q06_0a = 0) coorrcv = 3. EXECUTE. VARIABLE LABEL coorrcv 'Received NEEDED professional care coordination'. VALUE LABEL coorrcv 0 'Needed, did not get all prof care coor' 1 'Needed & got all prof care coor' 3 'Did not need prof care coor' 99 'DK/Ref/Missing to one or both'. RECODE c5q05 (6=6) (96=999) (SYSMIS=999) (1 thru 2=1) (3 thru 5=2) INTO r_c5q05 . EXECUTE . COMPUTE doccomm = 999. IF (r_c5q05 = 1) doccomm = 1. IF (r_c5q05 = 2) doccomm = 2. IF (r_c5q05 = 6) doccomm = 3. IF (c4q06_0a = 0) doccomm = 3. IF (c5q02 = 1) doccomm = 3. EXECUTE. VAR LABEL doccomm "Level of communication btw child's doctors". VALUE LABEL doccomm 1 'Excellent/very good' 2 'Good/Fair/Poor' 3 'Legitimate skip' 999 'DK/Ref/Missing'. RECODE c5q06 (6=6) (96=999) (97=999) (SYSMIS=999) (1 thru 2=1) (3 thru 5=2) INTO r_c5q06 . EXECUTE . VAR LABEL r_c5q06 'Recoded level of dr communication with other services'. VALUE LABEL r_c5q06 1 'Excellent/Very Good' 2 'Good/Fair/Poor' 6 'Communication not needed' 999 'DK/Ref'. COMPUTE othcom_1 = 999.

- 93 -

APPENDIX A-2

- 94 -

IF (r_c5q06 = 1) othcom_1 = 1. IF (r_c5q06 = 2) othcom_1 = 2. EXECUTE. VALUE LABEL othcom_1 1 'Excellent/Very Good' 2 'Good/Fair/Poor' 999 'Communication not needed or DK/Ref'. MISSING VALUES c5q02 (). EXECUTE. COMPUTE othcom_2 = 999. IF (c4q06_0a = 0) othcom_2 = 3. IF (c4q06_0a = 1) and (othcom_1 = 1) othcom_2 = 1. IF (c4q06_0a = 1) and (othcom_1 = 2) othcom_2 = 2. IF (c4q06_0a = 1) and (c5q02 = 1) othcom_2 = 3. IF (c4q06_0a = 1) and (c5q02 >= 6) othcom_2 = 999. EXECUTE. VALUE LABEL othcom_2 1 'Ex/VG' 2 'G/F/P' 3 'Prof care coor NOT needed or needed/NEVER helped' 999 'DK/Ref'. COMPUTE othcomm = 999. IF (r_c5q06 = 1) and (othcom_2 = 1) othcomm = 1. IF (r_c5q06 = 1) and (othcom_2 = 3) othcomm = 3. IF (r_c5q06 = 2) and (othcom_2 = 2) othcomm = 2. IF (r_c5q06 = 2) and (othcom_2 = 3) othcomm = 3. IF (r_c5q06 = 6) and (othcom_2 =3) othcomm = 3. IF (r_c5q06 = 6) and (othcom_2 =999) othcomm = 3. IF (r_c5q06 = 999) and (othcom_2 =3) othcomm = 3. EXECUTE. VAR LABEL othcomm 'Level of dr communication with other services'. VALUE LABEL othcomm 1 'Ex/VG' 2 'G/F/P' 3 'Legitimate skip' 999 'DK/Ref'. ****** Step 2: Construct "EFFECTIVE CARE COORDINATION " sub-component of MEDICAL HOME composite measure COMPUTE carecoor = 3. IF (coorrcv = 1) and ((doccomm = 1) or (doccomm = 3)) and ((othcomm = 1) or (othcomm = 3)) carecoor = 1. IF (coorrcv = 0) or (doccomm = 2) or (othcomm = 2) carecoor = 0. IF (coorrcv = 99) or (doccomm = 999) or (othcomm = 999) carecoor = 999. EXECUTE. VAR LABEL carecoor 'Effective care coordination sub-component of MEDICAL HOME composite measure'. VALUE LABEL carecoor 1 'Yes' 0 'No' 3 'Legitimate skip -- not needed or needed & never get help' 999 'DK/Ref/Missing'. RECODE carecoor (999=SYSMIS) .

APPENDIX A-2

- 95 -

******************************** MEDICAL HOME COMPOSITE MEASURE************************************ ***The following code uses the five sub-components created above to derive the MEDICAL HOME composite measure using the ON EVERY scoring approach COMPUTE mh_comp= 99. IF ((pdn = 1) and (usual = 1)) and ((carecoor = 1) or (carecoor = 3)) and ((norefprb = 1) or (norefprb = 3)) and ((famcent = 1) or (famcent = 3)) mh_comp = 1. IF (pdn = 0) or (usual = 0) or (carecoor = 0) or (norefprb = 0) or (famcent = 0) mh_comp = 0. IF (SYSMIS (pdn)) or (SYSMIS (usual)) or (SYSMIS (famcent)) or (SYSMIS (norefprb)) or (SYSMIS (carecoor)) mh_comp = 99. EXECUTE. MISSING VALUES mh_comp ( 99). VARIABLE LABEL mh_comp '% of CSHCN receiving coordinated, ongoing, comprehensive care within a medical home'. VALUE LABEL mh_comp 0 'Care DOES NOT meet medical home criteria' 1 'Care MEETS medical home criteria'.

APPENDIX A-2


Unweighted frequency distributions for the Medical Home sub-components, related interim variables

and composite measure generated by the SPSS scoring program

APPENDIX A-2


pdn Personal doctor or nurse sub-component of MEDICAL HOME compositemeasure

3927 10.1 10.1 10.1

34784 89.5 89.9 100.0

38711 99.6 100.0155 .4

38866 100.0

0 Do not have apersonal dr or nurse1 Yes, have apersonal dr or nurseTotal

Valid

SystemMissingTotal

Frequency Percent Valid PercentCumulative

Percent


time How often drs spent enough time

5391 13.9 14.5 14.531408 80.8 84.2 98.7

503 1.3 1.3 100.0

37302 96.0 100.01564 4.0

38866 100.0

0 Sometimes or never1 Usually or always99 DK/REF to item or# of dr visitsTotal

Valid

SystemMissingTotal


Percent

listen How often drs listened carefully

4015 10.3 10.7 10.732857 84.5 87.9 98.7

503 1.3 1.3 100.0

37375 96.2 100.01491 3.8

38866 100.0


Valid

SystemMissingTotal


Percent

- 99 -

APPENDIX A-2

sensitiv How often drs sensitive to families values/customs

4258 11.0 11.5 11.532167 82.8 87.1 98.6

503 1.3 1.4 100.0

36928 95.0 100.01938 5.0

38866 100.0


Valid

SystemMissingTotal


Percent

info How often got enough info from dr re: medical problems

6497 16.7 17.4 17.430237 77.8 81.2 98.6

503 1.3 1.4 100.0

37237 95.8 100.01629 4.2

38866 100.0


Valid

SystemMissingTotal


Percent

partner How often drs helped parents feel like partners

4633 11.9 12.4 12.432204 82.9 86.2 98.7

503 1.3 1.3 100.0

37340 96.1 100.01526 3.9

38866 100.0


Valid

SystemMissingTotal


Percent

- 100 -

APPENDIX A-2


famcent Family centered care sub-component of MEDICAL HOME compositemeasure

11031 28.4 29.5 29.524987 64.3 66.8 96.2

1404 3.6 3.8 100.037422 96.3 100.0

1444 3.738866 100.0

0 Does NOT have fcc1 Yes, has fcc3 Legitimate skipTotal

Valid

SystemMissingTotal


Percent

Comprehensive Care Component **Interim variables for No Problems Getting Needed Referrals sub-component

r_c4q07 Problems getting referral to specialist

5676 14.6 14.6 14.629787 76.6 76.6 91.2

2210 5.7 5.7 96.9

1098 2.8 2.8 99.895 .2 .2 100.0

38866 100.0 100.0

0 Big or small problem1 No problems4 Ch did NOT need tosee a specialist5 No need to get referrals999 DK/Ref/MissingTotal

ValidFrequency Percent Valid Percent

CumulativePercent

** No Problems Getting Needed Referrals sub-component score (NOREFPRB)

norefprb Getting needed referrals sub-component of MEDICAL HOMEcomposite measure

4026 10.4 10.4 10.4

16016 41.2 41.4 51.8

18670 48.0 48.2 100.038712 99.6 100.0

154 .438866 100.0

0 Needed referrals,problems getting1 Needed referrals,no problems3 Legitimate skipTotal

Valid

SystemMissingTotal


Percent

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APPENDIX A-2


sick Ch. has usual place for sick care

3661 9.4 9.4 9.435083 90.3 90.6 100.038744 99.7 100.0

122 .338866 100.0

0 No1 YesTotal

Valid

SystemMissingTotal


Percent

well Ch. has usual place for well care

369 .9 1.0 1.038368 98.7 99.0 100.038737 99.7 100.0

129 .338866 100.0

0 No1 YesTotal

Valid

SystemMissingTotal


Percent


usual Usual sources for sick and well care sub-component of MEDICAL HOMEcomposite measure

3664 9.4 9.5 9.5

34964 90.0 90.5 100.0

38628 99.4 100.0238 .6

38866 100.0

0 Ch. does not haveusual source of care1 Ch. has usualsource of careTotal

Valid

SystemMissingTotal


Percent

- 102 -

APPENDIX A-2


coorrcv Received NEEDED professional care coordination

779 2.0 2.0 2.0

3748 9.6 9.6 11.6

34160 87.9 87.9 99.5

179 .5 .5 100.0

38866 100.0 100.0

0 Needed, did notget all prof care coor1 Needed & got allprof care coor3 Did not need profcare coor99 DK/Ref/Missingto one or bothTotal


CumulativePercent

r_c5q05

1970 5.1 5.1 5.11740 4.5 4.5 9.5

66 .2 .2 9.735090 90.3 90.3 100.038866 100.0 100.0

126999Total


CumulativePercent

doccomm Level of communication btw child's doctors

1970 5.1 5.1 5.11740 4.5 4.5 9.5

34919 89.8 89.8 99.4237 .6 .6 100.0

38866 100.0 100.0

1 Excellent/very good2 Good/Fair/Poor3 Legitimate skip999 DK/Ref/MissingTotal


CumulativePercent

- 103 -

APPENDIX A-2

r_c5q06 Recoded level of dr communication with other services

15706 40.4 40.4 40.413763 35.4 35.4 75.8

8427 21.7 21.7 97.5

970 2.5 2.5 100.038866 100.0 100.0

1 Excellent/Very Good2 Good/Fair/Poor6 Communication notneeded999 DK/RefTotal


CumulativePercent

othcom_1

15706 40.4 40.4 40.413763 35.4 35.4 75.8

9397 24.2 24.2 100.0

38866 100.0 100.0

1 Excellent/Very Good2 Good/Fair/Poor999 Communicationnot needed or DK/RefTotal


CumulativePercent

othcom_2

1203 3.1 3.1 3.11993 5.1 5.1 8.2

34852 89.7 89.7 97.9

818 2.1 2.1 100.038866 100.0 100.0

1 Ex/VG2 G/F/P3 Prof care coor NOTneeded orneeded/NEVER helped999 DK/RefTotal


CumulativePercent

othcomm Level of dr communication with other services

1203 3.1 3.1 3.11993 5.1 5.1 8.2

35409 91.1 91.1 99.3261 .7 .7 100.0

38866 100.0 100.0

1 Ex/VG2 G/F/P3 Legitimate skip999 DK/RefTotal


CumulativePercent

- 104 -

APPENDIX A-2

- 105 -


carecoor Effective care coordination sub-component of MEDICAL HOMEcomposite measure

2665 6.9 6.9 6.91691 4.4 4.4 11.3

34160 87.9 88.7 100.0

38516 99.1 100.0350 .9

38866 100.0

0 No1 Yes3 Legitimate skip --not needed or needed& never get helpTotal

Valid

SystemMissingTotal


Percent

Medical Home Composite Measure **Medical Home Composite Measure score (MH_COMP)

mh_comp % of CSHCN receiving coordinated, ongoing, comprehensive carewithin a medical home

16691 42.9 45.5 45.5

20019 51.5 54.5 100.0

36710 94.5 100.02156 5.5

38866 100.0

0 Care DOES NOT meetmedical home criteria1 Care MEETS medicalhome criteriaTotal

Valid

99MissingTotal


Percent

APPENDIX A-2



APPENDIX A-2




SECTION 4: ACCESS TO CARE: UTILIZATION AND UNMET NEEDS



(1) YES (2) THERE IS NO PLACE [SKIP TO C4Q02] (3) THERE IS MORE THAN ONE PLACE (6) DON’T KNOW [SKIP TO C4Q02] (7) REFUSED [SKIP TO C4Q02]

(01) DOCTOR’S OFFICE [SKIP TO C4Q01] (02) HOSPITAL EMERGENCY ROOM [SKIP TO C4Q01] (03) HOSPITAL OUTPATIENT DEPARTMENT [SKIP TO C4Q01] (04) CLINIC OR HEALTH CENTER [SKIP TO C4Q01] (05) SCHOOL (NURSE’S OFFICE, ATHLETIC TRAINER’S OFFICE, ETC) [SKIP TO C4Q01] (06) SOME OTHER PLACE [SKIP TO C4Q01] (07) DOES NOT GO TO ONE PLACE MOST OFTEN

[SKIP TO C4Q02] (96) DON’T KNOW [SKIP TO C4Q02] (97) REFUSED [SKIP TO C4Q02]

C4q01 Is the [place selected in C4q0b] that (S.C.) goes to when (he/she) is sick the same place (S.C.) usually goes for routine preventive care?

(1) YES [SKIP TO C4Q02A] (2) NO [SKIP TO C4Q02] (6) DON’T KNOW [SKIP TO C4Q02A] (7) REFUSED [SKIP TO C4Q02A]


(01) DOES NOT GET PREVENTIVE CARE ANYWHERE (02) DOCTOR’S OFFICE (03) HOSPITAL EMERGENCY ROOM (04) HOSPITAL OUTPATIENT DEPARTMENT (05) CLINIC OR HEALTH CENTER (06) SCHOOL (NURSE’S OFFICE, ATHLETIC TRAINER’S OFFICE, ETC) (07) SOME OTHER PLACE [SKIP TO C4Q02_1] (08) DOES NOT GO TO ONE PLACE MOST OFTEN (96) DON’T KNOW (97) REFUSED

C4q02a A personal doctor or nurse is the health provider who knows (S.C.) best. Do you have ONE person that you think of as (S.C.)’s personal doctor or nurse?


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APPENDIX A-2




C4q05_02 During the past 12 months, was there any time when (“S” CHILD) needed care from a specialty doctor?

(1) YES (2) NO [SKIP TO C4Q05_03] (6) DON’T KNOW [SKIP TO C4Q05_03] (7) REFUSED [SKIP TO C4Q05_03]

C4q06_0a During the past 12 months, was there any time when you or other family members needed professional care coordination among different health care providers and services that the child uses? If Yes to C4q06_0a:

C4q06x0aa Did you or your family receive all the professional care coordination that was needed?

(1) YES (2) NO [SKIP TO C4Q06_01] (6) DON’T KNOW [SKIP TO C4Q06_01] (7) REFUSED [[SKIP TO C4Q06_01]


C4q07 In the past 12 months, how much of a problem, if any, was it to get a referral to a specialist that your child needed to see?

(1) Big problem (2) Small problem (3) Not a problem (4) Child did not go to see a specialist in the past 12 months (5) DID NOT NEED REFERRALS (6) DON’T KNOW (7) REFUSED


C5q02 Earlier you told me that you or other family members needed professional assistance coordinating (“S” CHILD)’s care. How often does a professional help you coordinate (“S” CHILD)’s care among (his/her) different providers and services?

(1) Never [SKIP TO C5q06] (2) Sometimes (3) Usually (4) Always (6) DON’T KNOW [SKIP TO C5q06] (7) REFUSED [SKIP TO C5q06]

C5q05 How well do you think (“S” CHILD)’s doctors and other health care providers communicate with each other about (“S” CHILD)’s care?

(01) Excellent (02) Very Good (03) Good (04) Fair or (05) Poor (06) COMMUNICATION NOT NEEDED (96) DON’T KNOW (97) REFUSED

- 110 -

APPENDIX A-2

- 111 -




C5q06 How well do you think (“S” CHILD) ’s doctors and other health care providers communicate with (his/her) school, early intervention program, child care providers, or vocational rehabilitation program?

(01) Excellent (02) Very Good (03) Good (04) Fair or (05) Poor (06) COMMUNICATION NOT NEEDED (96) DON’T KNOW

(97) REFUSED

SECTION 6: SATISFACTION WITH CARE











APPENDIX B-1

2005/2006 NATIONAL SURVEY OF CHILDREN WITH SPECIAL HEALTH CARE NEEDS

APPENDIX B_1: SAS User Resources


APPENDIX B-1



2001 NS-CSHCN

2005/06 NS-CSHCN

% CSHCN ages 0-17*




89.0

93.5


ACCESSIBLE -- -- --



64.2

80.0 84.5 82.2 77.4 82.2

--

62.4

74.7 84.3 84.4 78.9 83.2

0.8


CONTINUOUS -- --




38.8 49.6

90.5 90.6 98.8

26.0 33.0

92.9 94.3 97.1





4.5 9.5 5.1 3.0

-- -- --

46.0 -- -- --

30.4 41.8 14.1





- 115 -

.

APPENDIX B-1


SAS Medical Home

scoring program

APPENDIX B-1

Measuring Medical Home using Data Elements from the 2005/06 National Survey of Children with Special Health Care Needs

(NS-CSHCN) SAS scoring program variable names for the five sub-component scores and

associated interim variables used to derive the Medical Home composite measure

2005/06 NS-CSHCN

SAS Variable names

Survey items or interim variables used to construct:

Meet overall criteria for having a Medical Home: MH_COMP [PERSDOC; FAMCENT; NOREFPRB; USUALSW; CARECOOR]


1) Child has at least one “personal doctor or nurse”

PERSDOC

C4Q02a

ACCESSIBLE -- --


a. Usually or always spend enough time with child and parent b. Usually or always listen carefully to child and parent c. Usually or always sensitive to family’s values and customs d. Usually or always provide needed information e. Usually or always make family feel like a partner in child’s care f. IF needed, interpreter services are usually or always available

FAMCENT

TIME LISTEN SENSITIV INFO PARTNER2 INTERPRET

[TIME; LISTEN;SENSITIV; INFO; PARTNER2, INTERPRET]

C6q02 C6q03 C6q04 C6q05 C6q06 S5q13; S5q13a

CONTINUOUS -- --



NOREFPRB

USUALSW USUALS USUALW

C5q11; C4q07

[USUALS; USUALW]

C4q0a; C4q0b C4q0d; C4q01; C4q02


a. Needed and usually got extra help with care coordination b. IF needed, very satisfied with communication btw doctors c. IF needed, very satisfied with how doctors communicate with school or other programs the child attends

CARECOOR


[COORRCV; DOCCOMM; OTHCOMM] C5q12, C5q17; C5q09 C5q10 C5q05; C5q06



- 119 -

APPENDIX B-1

2005/06 NS-CSHCN MEDICAL HOME Composite measure


C4Q02a, C6Q02 – C6Q06, S5Q13, S5Q13a, C5Q11, C4Q07, C4Q0a, C4Q0b, C4Q0d, C4Q01, C4Q02, C5Q12, C5Q17, C5Q09, C5Q10, C5Q05, C5Q06

Survey Items Used


Numerator


Percent of CSHCN ages 0–17 who have a primary care provider (e.g. personal doctor or nurse) AND usual sources for both sick and preventive care AND consistently get family-centered care from their doctors and other health care providers AND, if needed, receive effective care coordination AND, if needed, no problems getting referrals

Description


The medical home composite measure and its sub-components are designed to operationalize the American Academy of Pediatrics (AAP) definition of “medical home. ‘ According to this definition, children ideally should have access to “accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective care within a medical home.”



Formats

**** The following program sets the formats for the medical home sub-components, associated interim variables, and the overall medical home composite measure created by the SAS scoring program proc format library = library name; value persdoc /*PDN sub-component*/ 2 = "Do not have personal dr or nurse" 1 = "Yes, have a personal dr or nurse"; value howoften /*interim variable*/ 2 = "Sometimes/Never" 1 = "Usually/Always"; value fcc /*FCC sub-component*/ 2 = "Does NOT have fcc" 1 = "Yes, has fcc" ; value referral /*Getting referrals sub-component*/ 2 = "Needed referrals, problems getting" 1 = "Needed referrals, no problems"; value yn /*interim variable*/ 0 = "No" 2 = "No" 1 = "Yes";

- 121 -

APPENDIX B-1

value usualsw /*Usual source care care sub-component*/ 2 = "Does not have usual sources of care" 1 = "DOES have usual sources for sick and well care"; value cccom /*interim variables for care coor communication*/ 1 = "Very satisfied" 2 = "Less than very satisfied"; value effcarecoor /*Effect care coor sub-component*/ 1 = "Has effective care coor" 2 = "Does not have effective care coor"; value medhome /*Composite meas*/ 1 = "Care MEETS medical home criteria" 2 = "Care DOES NOT meet medical home criteria"; RUN; Scoring program

*****************************Personal doctor or nurse (PDN) Component******************************** /*Personal Doctor or Nurse Component*/ /**Personal Doctor or Nurse" sub-component of MEDICAL HOME composite measure**/ persdoc=.; if c4q02a in (1,2) then persdoc = 1; else if c4q02a = 3 then persdoc = 2; else if c4q02a in (6,7,.M) then persdoc = .M; label persdoc = "Personal Doctor or Nurse sub-component of MEDICAL HOME composite measure"; ******************************* Family Centered Care Component **************************************** /**FAMILY CENTERED COMPONENT**/ /**Family Centered Care" sub-component of MEDICAL HOME composite measure**/ /**Step 1: Set up the interim variables used to derive the Family Centered Care sub-component of the MEDICAL HOME composite measure**/ time=.; if c6q02 in (6,7) then time = .M; else if c6q02 = .L then time = .L; else if c6q02 = 1 or c6q02 = 2 then time = 2; else if c6q02 = 3 or c6q02 = 4 then time = 1; label time = 'FCC: Doctors usually or always spend enough time'; listen=.; if c6q03 in (6,7) then listen = .M; else if c6q03 = .L then listen = .L; else if c6q03 = 1 or c6q03 = 2 then listen = 2; else if c6q03 = 3 or c6q03 = 4 then listen = 1; label listen = 'FCC: Doctors usually or always listen carefully'; sensitiv=.; if c6q04 in (6,7) then sensitiv = .M; else if c6q04 = .L then sensitiv = .L; else if c6q04 = 1 or c6q04 = 2 then sensitiv = 2; else if c6q04 = 3 or c6q04 = 4 then sensitiv = 1; label sensitiv = 'FCC: Doctors are usually or always sensitive to values and customs';

- 122 -

APPENDIX B-1

info=.; if c6q05 in (6,7) then info = .M; else if c6q05 = .L then info = .L; else if c6q05 = 1 or c6q05 = 2 then info = 2; else if c6q05 = 3 or c6q05 = 4 then info = 1; label info = 'FCC: Doctors usually or always provide needed information'; partner2=.; if c6q06 in (6,7) then partner2 = .M; else if c6q06 = .L then partner2 = .L; else if c6q06 = 1 or c6q06 = 2 then partner2 = 2; else if c6q06 = 3 or c6q06 = 4 then partner2 = 1; label partner2 = 'FCC: Doctors usually or always make the family feel like a partner'; interpret=.; if s5q13a in (6,7) then interpret = .M; else if s5q13a = .L then interpret = .L; else if s5q13a = 1 or s5q13a = 2 then interpret = 2; else if s5q13a = 3 or s5q13a = 4 then interpret = 1; label interpret = 'FCC: An interpreter is usually or always available when needed'; /**Step 2: Construct the Family Centered Care sub-component of MEDICAL HOME composite measure**/ famcent = .; if time = .M or listen = .M or sensitiv = .M or info = .M or partner2 = .M or interpret = .M then famcent = .M; else if time = .L then famcent = .L; else if time in (1,.L) and listen in (1,.L) and sensitiv in (1,.L) and info in (1,.L) and partner2 in (1,.L) and interpret in (1,.L) then famcent = 1; else if time = 2 or listen = 2 or sensitiv = 2 or info = 2 or partner2 = 2 or interpret = 2 then famcent = 2; label famcent = 'Family-Centered Care sub-component of MEDICAL HOME composite measure'; *************************************Comprehensive Care Component ************************************ /**COMPREHENSIVE CARE COMPONENT**/ /**No Problems Getting Needed Referrals sub-component of MEDICAL HOME composite measure**/ norefprb = .; if c5q11 = 0 then norefprb = .L; else if c5q11 in (6,7) then norefprb = .M; else if c4q07 in (1,2) then norefprb = 2; else if c4q07 = 3 then norefprb = 1; else if c4q07 in (6,7) then norefprb = .M; label norefprb = 'Getting Needed Referrals sub-component of MEDICAL HOME composite measure';

- 123 -

APPENDIX B-1

/**Usual Sources for Sick and Well Care sub-component of MEDICAL HOME composite measure**/ /**Step 1: Set up the interim variables used to derive the Usual Sources for Sick and Well Care sub-component of the MEDICAL HOME composite measure**/ usuals = .; if c4q0a in (1,3) and c4q0br in (1,3,4,5,6,8,10) then usuals = 1; else if c4q0a = 2 or c4q0br in (2,7,9) then usuals = 2; else if c4q0a in (6,7) or c4q0br in (.M,96,97) then usuals = .M; label usuals = 'Has a usual source for sick care'; usualw = .; if c4q0d in (1,3) and (usuals = .M and c4q01 = 1) then usualw = .M; else if c4q0d in (1,3) and c4q01 in (6,7) then usualw = .M; else if c4q0d in (1,3) and ((usuals = 1 and c4q01 = 1) or (c4q02r in (1,3,4,5,6,8))) then usualw = 1; else if c4q0d in (1,3) and (usuals = 2 and c4q01 = 1) then usualw = 2; else if c4q0d = 2 or c4q02r in (2,7,9) then usualw = 2; else if c4q0d in (6,7) or c4q02r in (96,97) then usualw = .M; label usualw /**Step 2: Construct the Usual Sources for Sick and Well Care sub-component of MEDICAL HOME composite measure**/ usualsw = .; if usuals = .M or usualw = .M then usualsw = .M; else if usuals in (1,.L) and usualw in (1,.L) then usualsw = 1; else if usuals = 2 or usualw = 2 then usualsw = 2; label usualsw = 'Usual Sources for Sick and Well sub-component of MEDICAL HOME composite measure'; ***********************************Coordinated Care Component **************************************** /**COORDINATED CARE COMPONENT**/ /**Gets Effective Care Coordination sub-component of MEDICAL HOME composite measure**/ /**Step 1: Set up the interim variables used to derive the Gets Effective Care Coordination sub-component of the MEDICAL HOME composite measure**/ if (c4q05x02a = 1 or c4q05x02c = 1) or (c4q05x05a = 1 or c4q05x05c = 1) or (c4q05x06a = 1 or c4q05x06c = 1) or (c4q05x07a = 1 or c4q05x07c = 1) or (c4q05x08a = 1 or c4q05x08c = 1) then doccommneed = 1; else if (c4q05_x02 = 0 or c4q05x02c = 0) and (c4q05_x05 = 0 or c4q05x05c = 0) and (c4q05_x06 = 0 or c4q05x06c = 0) and (c4q05_x07 = 0 or c4q05_x07 = .L or c4q05x07c = 0) and (c4q05_x08 = 0 or c4q05x08c = 0) then doccommneed = 0; else doccommneed = .M; label doccommneed = 'Doctor communication needed if specialist, MH, PT/OT/ST, sub abuse, or home hlth care used'; doccomm = .; if doccommneed = 0 then doccomm = .L; else if doccommneed = .M then doccomm = .M; else if c5q10 = 1 h n doccomm = 1; t e else if c5q10 in (2,3,4) then doccomm = 2; else if c5q10 = 5 then doccomm = .L; else if c5q10 in 6,7,.M) then doccomm = .M; (else if c5q10 = .L then doccomm = .L; label doccomm = 'Family is very satisfied with doctors communication with each other';

- 124 -

APPENDIX B-1

othcomm = .; if c5q05 = 2 then othcomm = .L; else if c5q05 in (6,7) then othcomm = .M; else if c5q06 = 1 h n othcomm = 1; t e else if c5q06 in (2,3,4) then othcomm = 2; else if c5q06 in (6,7,.M) then othcomm = .M; else if c5q06 = .L then othcomm = .L; label othcomm = 'Family is very satisfied with doctors communication with other programs'; coorrcv = .; if c5q12 = .L then coorrcv = .L; else if c5q12 = .M then coorrcv = .M; else if c5q12 = 0 and c5q17 = 0 then coorrcv = .L; else if c5q12 in (6,7) and c5q17 = 0 then coorrcv = .M; else if c5q17 in (6,7) then coorrcv = .M; else if c5q09 in (6,7) then coorrcv = .M; else if c5q12 = 1 and c5q17 = 0 then coorrcv = 1; else if c5q09 = 3 then coorrcv = 1; else if c5q09 in (1,2) then coorrcv = 2; label coorrcv = 'Family usually or always gets sufficient help coordinating care if needed'; /**Step 2: Construct the Gets Effective Care Coordination sub-component of MEDICAL HOME composite measure**/ carecoor = .; if coorrcv = .M or doccomm = .M or othcomm = .M then carecoor = .M; else if coorrcv = .L and doccomm = .L and othcomm = .L then carecoor = .L; else if coorrcv in (1,.L) and doccomm in (1,.L) and othcomm in (1,.L) then carecoor= 1; else if coorrcv = 2 or doccomm = 2 or othcomm = 2 then carecoor = 2; label carecoor = 'Effective Care Coor sub-component of MEDICAL HOME composite measure'; ******************************** MEDICAL HOME COMPOSITE MEASURE************************************ /**** MEDICAL HOME COMPOSITE MEASURE****/ /**The following code uses the 5 sub-components created above to derive the MEDICAL HOME composite measure using the ON EVERY scoring approach**/ mh_comp= .; if persdoc = .M or usualsw = .M or famcent = .M or norefprb = .M or carecoor = .M then mh_comp= .M; else if persdoc = .L and usualsw = .L and famcent = .L and norefprb = .L and carecoor = .L then mh_comp= .L; else if persdoc in (1,.L) and usualsw in (1,.L) and norefprb in (1,.L) and famcent in (1,.L) and carecoor in (1,.L) then mh_comp= 1; else if persdoc = 2 or usualsw = 2 or norefprb = 2 or famcent = 2 or carecoor = 2 then mh_comp= 2; label mh_comp= '% CSHCN receiving coordinated, ongoing, comprehensive care within a medical home'; RUN;

- 125 -

APPENDIX B-1

- 126 -

PROC FREQ DATA=dataset name; FORMAT time howoften. listen howoften. sensitiv howoften. info howoften. partner2 howoften. interpret howoften. persdoc persdoc. famcent fcc. norefprb referral. usuals usualw doccommneed coorrcv yn. usualsw usualsw. othcomm doccomm cccom. carecoor effcarecoor. mh_comp medhome.; TABLES persdoc time listen sensitiv info partner2 interpret famcent norefprb usuals usualw usualsw coorrcv doccomm othcomm carecoor mh_comp; RUN;

APPENDIX B-1




SAS scoring program

APPENDIX B-1

Personal Doctor or Nurse (PDN) Component **PDN sub-component score (PERSDOC) Personal Doctor or Nurse sub-component of MEDICAL HOME composite measure Cumulative Cumulative persdoc Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Yes, have a personal dr or nurse 38358 94.34 38358 94.34 Do not have personal dr or nurse 2300 5.66 40658 100.00 Frequency Missing = 65




FCC: Doctors usually or always spend enough time Cumulative Cumulative time Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Usually/Always 31287 80.71 31287 80.71 Sometimes/Never 7478 19.29 38765 100.00

FCC: Doctors usually or always listen carefully Cumulative Cumulative listen Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Usually/Always 34819 89.72 34819 89.72 Sometimes/Never 3990 10.28 38809 100.00

- 129 -

APPENDIX B-1

FCC: Doctors are usually or always sensitive to values and customs Cumulative Cumulative sensitiv Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Usually/Always 34746 90.12 34746 90.12 Sometimes/Never 3809 9.88 38555 100.00 Frequency Missing = 2168

FCC: Doctors usually or always provide needed information Cumulative Cumulative info Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Usually/Always 32367 83.48 32367 83.48 Sometimes/Never 6406 16.52 38773 100.00




FCC: Doctors usually or always make the family feel like a partner Cumulative Cumulative partner2 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Usually/Always 34380 88.55 34380 88.55 Sometimes/Never 4445 11.45 38825 100.00

FCC: An interpreter is usually or always available when needed Cumulative Cumulative interpret Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Usually/Always 248 59.05 248 59.05 Sometimes/Never 172 40.95 420 100.00

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APPENDIX B-1


Family-Centered Care sub-component of MEDICAL HOME composite measure Cumulative Cumulative famcent Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Yes, has fcc 25910 67.75 25910 67.75 Does NOT have fcc 12332 32.25 38242 100.00

Comprehensive Care Component ** No Problems Getting Needed Referrals sub-component score (NOREFPRB)





Getting Needed Referrals sub-component of MEDICAL HOME composite measure Cumulative Cumulative norefprb Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Needed referrals, no problems 10675 79.91 10675 79.91 Needed referrals, problems getting 2683 20.09 13358 100.00

Has a usual source for sick care Cumulative Cumulative usuals Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Yes 38506 94.81 38506 94.81 No 2108 5.19 40614 100.00

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APPENDIX B-1

Has a usual source for preventive care Cumulative Cumulative usualw Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Yes 39508 97.25 39508 97.25 No 1118 2.75 40626 100.00 Frequency Missing = 97

**Usual Sources for Sick and Well Care sub-component score (USUALSW)




Usual Sources for Sick and Well sub-component of MEDICAL HOME composite measure Cumulative Cumulative usualsw Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ DOES have usual sources 37830 93.29 37830 93.29 for sick and well care Does not have usual sources of care 2721 6.71 40551 100.00

Family usually or always gets sufficient help coordinating care if needed Cumulative Cumulative coorrcv Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Yes 12252 68.82 12252 68.82 No 5551 31.18 17803 100.00

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APPENDIX B-1

Family is very satisfied with doctors communication with each other Cumulative Cumulative doccomm Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Very satisfied 17070 63.92 17070 63.92 Less than very satisfied 9636 36.08 26706 100.00





Family is very satisfied with doctors communication with other programs Cumulative Cumulative othcomm Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Very satisfied 5690 51.37 5690 51.37 Less than very satisfied 5387 48.63 11077 100.00

Effective Care Coor sub-component of MEDICAL HOME composite measure Cumulative Cumulative carecoor Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Has effective care coor 18395 59.39 18395 59.39 Does not have effective care coor 12576 40.61 30971 100.00

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APPENDIX B-1

- 134 -


% CSHCN receiving coordinated, ongoing, comprehensive care within a medical home Cumulative Cumulative mh_comp Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Care MEETS medical home criteria 18977 48.80 18977 48.80 Care DOES NOT meet medical home criteria 19909 51.20 38886 100.00 Frequency Missing = 1837

APPENDIX B-1



APPENDIX B-1

2005/06 NS-CSHCN Text and response options for questions used to assess Medical Home



SECTION 4: ACCESS TO CARE -- UTILIZATION AND UNMET NEEDS



(1) YES (2) THERE IS NO PLACE [SKIP TO C4Q0D] (3) THERE IS MORE THAN ONE PLACE (6) DON’T KNOW [SKIP TO C4Q0D] (7) REFUSED [SKIP TO C4Q0D] (01) DOCTOR’S OFFICE [SKIP TO C4Q0D] (02) HOSPITAL EMERGENCY ROOM [SKIP TO C4Q0D] (03) HOSPITAL OUTPATIENT DEPARTMENT [SKIP TO C4Q0D] (04) CLINIC OR HEALTH CENTER [SKIP TO C4Q0D] (05) SCHOOL (NURSE’S OFFICE, ATHLETIC TRAINER’S OFFICE, ETC) [SKIP TO C4Q0D] (06) FRIEND/RELATIVE [SKIP TO C4Q0D] (07) MEXICO/OTHER LOCATIONS OUT OF US [SKIP TO C4Q0D] (08) SOME OTHER PLACE [SKIP TO C4Q0C] (09) DOES NOT GO TO ONE PLACE MOST OFTEN

[SKIP TO C4Q0D] (96) DON’T KNOW [SKIP TO C4Q0D] (97) REFUSED [SKIP TO C4Q0D]

C4q0d Is there a place that (S.C.) USUALLY goes when (he/she) needs routine preventive care, such as a physical examination or well-child check-up?

If Yes to C4q0d: C4q01 Is the [place selected in C4q0b] that (S.C.) goes to when (he/she) is sick the same place (S.C.) usually goes for routine preventive care?

(1) YES (2) THERE IS NO PLACE [SKIP TO C4Q02A] (3) THERE IS MORE THAN ONE PLACE (6) DON’T KNOW [SKIP TO C4Q02A] (7) REFUSED [SKIP TO C4Q02A] (1) YES [SKIP TO C4Q02A] (2) NO (6) DON’T KNOW [SKIP TO C4Q02A] (7) REFUSED [SKIP TO C4Q02A]


(01) DOCTOR’S OFFICE (02) HOSPITAL EMERGENCY ROOM (03) HOSPITAL OUTPATIENT DEPARTMENT (04) CLINIC OR HEALTH CENTER (05) SCHOOL (NURSE’S OFFICE, ATHLETIC TRAINER’S OFFICE, ETC) (06) FRIEND/RELATIVE (07) MEXICO/OTHER LOCATIONS OUT OF US (08) SOME OTHER PLACE [SKIP TO C4Q02_1] (09) DOES NOT GO TO ONE PLACE MOST OFTEN (96) DON’T KNOW (97) REFUSED

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APPENDIX B-1




C4q02a A personal doctor or nurse is a health professional who knows your child well and is familiar with your child’s health history. This can be a general doctor, a pediatrician, a specialist doctor, a nurse practitioner, or a physician’s assistant. Do you have one or more persons you think of as (S.C.)’s personal doctor or nurse?

(1) YES, ONE PERSON (2) YES, MORE THAN ONE PERSON (3) NO [SKIP TO C4Q03] (6) DON’T KNOW [SKIP TO C4Q03] (7) REFUSED [SKIP TO C4Q03]


C5q11 During the past 12 months, did (S.C.) need a referral to see any doctors or receive any services? If Yes to C5q11:

C4q07 Was getting referrals a big problem, a small problem, or not a problem?

(1) YES (2) NO [SKIP TO C5Q12] (6) DON’T KNOW [SKIP TO C5Q12] (7) REFUSED [SKIP TO C5Q12] (1) Big problem (2) Small problem (3) Not a problem (6) DON’T KNOW (7) REFUSED

C5q17 During the past 12 months, have you felt that you could have used extra help arranging or coordinating (S.C.)’s care among these different health care providers or services? If Yes to C5q17:

C5q09 During the past 12 months, how often did you get as much help as you wanted with arranging or coordinating (S.C.)’s care?


(1) Never (2) Sometimes (3) Usually (6) DON’T KNOW (7) REFUSED

C5q10 Overall, are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied with the communication among (S.C.)’s doctors and other health care providers?

(1) Very satisfied (2) Somewhat satisfied (3) Somewhat dissatisfied (4) Very dissatisfied (5) NO COMMUNICATION NEEDED OR WANTED (6) DON’T KNOW (7) REFUSED

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APPENDIX B-1




C5q05 Do (S.C.)’s doctors or other health care providers need to communicate with (his/her) school, early intervention program, child care providers, vocational education or rehabilitation program? If Yes to C5q05:

C5q06 Overall, are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied with that communication?


(1) Very satisfied (2) Somewhat satisfied (3) Somewhat dissatisfied (4) Very dissatisfied (6) DON’T KNOW (7) REFUSED

SECTION 6A: FAMILY CENTERED CARE









- 139 -

APPENDIX B-1

- 140 -






S5q13 During the past 12 months, did you (or S.C.) need an interpreter to help speak with (his/her) doctors or other health care providers?

If Yes to S5q13:

S5q13a When you (or S.C.) needed an interpreter, how often were you able to get someone other than a family member to help you speak with (his/her) doctors or other health care providers?

(1) YES [SKIP TO S5Q13A] (2) NO [SKIP TO C6Q07] (6) DON’T KNOW [SKIP TO C6Q07] (7) REFUSED [SKIP TO C6Q07]


APPENDIX B-2


APPENDIX B_2: SPSS User Resources


APPENDIX B-2



2001 NS-CSHCN

2005/06 NS-CSHCN

% CSHCN ages 0-17*




89.0

93.5


ACCESSIBLE -- -- --



64.2

80.0 84.5 82.2 77.4 82.2

--

62.4

74.7 84.3 84.4 78.9 83.2

0.8


CONTINUOUS -- --




38.8 49.6

90.5 90.6 98.8

26.0 33.0

92.9 94.3 97.1





4.5 9.5 5.1 3.0

-- -- --

46.0 -- -- --

30.4 41.8

5) Significant changes were made in 2005/06 in the content, wording, placement, and skip patterns of the questions used to assess effective care coordination 14.1




- 143 -

APPENDIX B-2


SPSS Medical Home

scoring program

APPENDIX B-2

Measuring Medical Home using Data Elements from the 2005/06 National Survey of Children with Special Health Care Needs

(NS-CSHCN) SPSS scoring program variable names for the five sub-component scores and


2005/06 NS-CSHCN

SPSS Variable names





PDN

C4q02a

ACCESSIBLE -- --



FAMCENT

TIME LISTEN SENSITIV INFO PARTNER INTERPRET

[TIME; LISTEN;SENSITIV; INFO; PARTNER; INTERPRET]

C6q02 C6q03 C6q04 C6q05 C6q06 S5q13; S5q13a

CONTINUOUS -- --



NOREFPRB

USUAL SICK WELL

C5q11; C4q07

[SICK; WELL]

C4q0a; C4q0b C4q0d; C4q01; C4q02



CARECOOR

CAREHLP DRCOMM OTHERCOMM

[CAREHLP; DRCOMM; OTHERCOMM] C5q12, C5q17; C5q09 C5q10 C5q05; C5q06



-- Not assessed by the survey. † Questions assessing these concepts are combined under the Family Centered Care component for scoring purposes

- 147 -

APPENDIX B-2

2005/06 NS-CSHCN MEDICAL HOME Composite measure


#2 CSHCN will receive coordinated, ongoing, comprehensive care within a medical home

Survey Items Used C4Q02a, C6Q02 – C6Q06, S5Q13, S5Q13a, C5Q11, C4Q07, C4Q0a, C4Q0b, C4Q0d, C4Q01, C4Q02, C5Q12, C5Q17, C5Q09, C5Q10, C5Q05, C5Q06


Numerator

Denominator Children with special health care needs (CSHCN) ages 0–17 years

Description Percent of CSHCN ages 0–17 who have a primary care provider (e.g. personal doctor or nurse) AND usual sources for both sick and preventive care AND consistently get family-centered care from their doctors and other health care providers AND, if needed, receive effective care coordination AND, if needed, no problems getting referrals





***************************Personal doctor or nurse (PDN) Component *************************** ***PERSONAL DOCTOR or NURSE sub-component of MEDICAL HOME composite measure COMPUTE pdn = 99. IF (c4q02a = 1) pdn = 1. IF (c4q02a = 2) pdn = 1. IF (c4q02a = 3) pdn = 0. EXECUTE. VARIABLE LABEL pdn ‘Personal Doctor or Nurse sub-component of MEDICAL HOME composite measure'. VALUE LABEL pdn 0 'Do not have a personal dr or nurse' 1 'Yes, have a personal dr or nurse' 99 'DK/REF/MISSING'. RECODE pdn (99=SYSMIS).

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APPENDIX B-2

*************************** Family Centered Care Component ********************************* *** FAMILY-CENTERED CARE sub-component of MEDICAL HOME composite measure ****** Step 1: The following syntax sets up the interim variables used to derive the overall score for "Family-Centered Care" sub-component of MEDICAL HOME composite measure MISSING VALUES c6q01r (). EXECUTE. COMPUTE time = 99. IF (c6q02 = 1 or c6q02 = 2) time = 0. IF (c6q02 = 3 or c6q02 = 4) time = 1. IF (sysmis (c6q02)) time = 2. EXECUTE. VAR LABEL time 'Drs/other health providers spend enough time (c6q02 recoded)'. VALUE LABEL time 0 'Never/sometimes' 1 'Usually/always' 2 'No dr visits past 12 mos' 99 'DK/Ref'. COMPUTE listen = 99. IF (c6q03 = 1 or c6q03 = 2) listen = 0. IF (c6q03 = 3 or c6q03 = 4) listen = 1. IF (sysmis (c6q03)) listen = 2. EXECUTE. VAR LABEL listen 'Drs/other health providers listen well (c6q03 recoded)'. VALUE LABEL listen 0 'Never/sometimes' 1 'Usually/always' 2 'No dr visits past 12 mos' 99 'DK/Ref'. COMPUTE sensitiv = 99. IF (c6q04 = 1 or c6q04 = 2) sensitiv = 0. IF (c6q04 = 3 or c6q04 = 4) sensitiv = 1. IF (sysmis (c6q04)) sensitiv = 2. EXECUTE. VAR LABEL sensitiv 'Drs/other health providers sensitive to family values/customs (c6q04 recoded)'. VALUE LABEL sensitiv 0 'Never/sometimes' 1 'Usually/always' 2 'No dr visits past 12 mos' 99 'DK/Ref'. COMPUTE info = 99. IF (c6q05 = 1 or c6q05 = 2) info = 0. IF (c6q05 = 3 or c6q05 = 4) info = 1. IF (sysmis (c6q05)) info = 2. EXECUTE. VAR LABEL info 'Drs/other health providers provide needed information (c6q05 recoded)'. VALUE LABEL info 0 'Never/sometimes' 1 'Usually/always' 2 'No dr visits past 12 mos' 99 'DK/Ref'.

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APPENDIX B-2

COMPUTE partner = 99. IF (c6q06 = 1 or c6q06 = 2) partner = 0. IF (c6q06 = 3 or c6q06 = 4) partner = 1. IF (sysmis (c6q06)) partner = 2. EXECUTE. VAR LABEL partner 'Drs/other health providers make family feel like a partner (c6q06 recoded)'. VALUE LABEL partner 0 'Never/sometimes' 1 'Usually/always' 2 'No dr visits past 12 mos' 99 'DK/Ref'. RECODE S5q13A (SYSMIS = 999). EXECUTE . COMPUTE interpret = 99. IF (S5q13A = 1 or S5q13A = 2) interpret = 0. IF (S5q13A = 3 or s5q13A = 4) interpret = 1. IF (S5q13A = 999) interpret = 2. EXECUTE. VAR LABEL interpret "Able to get interpreter if needed during ch's dr visits". VALUE LABEL interpret 0 'Never/sometimes' 1 'Usually/always' 2 'Does not need interpreter' 99 'DK/Ref'. ****** Step 2: Construct "Family-Centered Care" sub-component of MEDICAL HOME composite measure COMPUTE famcent = 99. IF (time = 0) or (listen = 0) or (sensitiv = 0) or (info = 0) or (partner = 0) or (interpret = 0) famcent = 0. IF (time =1 or time = 2) and (listen =1 or listen = 2) and (sensitiv =1 or sensitiv = 2) and (info =1 or info = 2) and (partner =1 or partner =2) and ((interpret =1) or (interpret = 1 or interpret = 2)) famcent = 1. IF (time = 99 or listen = 99 or sensitiv = 99 or info = 99 or partner = 99 or interpret = 99) famcent = 99. IF (c6q01r = 0) famcent = 2. EXECUTE. VARIABLE LABEL famcent 'Family-Centered Care sub-component of MEDICAL HOME composite measure'. VALUE LABEL famcent 0 'Does NOT have fcc' 1 'Yes, has fcc' 2 'Legitimate skip - no dr visit past 12 mos' 99 'DK/Ref to any'. RECODE famcent (99=SYSMIS).

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APPENDIX B-2

*************************************Comprehensive Care Component ************************************ *** GETTING NEEDED REFERRALS sub-component of MEDICAL HOME composite measure ****** Construct "No Problems Getting Needed Referrals " sub-component of MEDICAL HOME composite measure RECODE C4Q07 (SYSMIS=999). EXECUTE . COMPUTE norefprb= 99. IF (c4q07 = 1) or (c4q07 = 2)norefprb= 0. IF (c4q07 = 3) norefprb= 1. IF (c5q11 = 0) norefprb= 2. VAR LABEL norefprb 'Getting Needed Referrals sub-component of MEDICAL HOME composite measure'. VALUE LABEL norefprb 0 'Big or small problem getting referral, when needed' 1 'No problems getting referral, when needed' 99 'DK/REF/MISSING'. 2 'Legitimate skip b/c referrals are not needed'. RECODE norefprb (99=SYSMIS). ***USUAL SOURCES FOR SICK AND WELL CARE sub-component of MEDICAL HOME composite measure ****** Step 1: The following syntax sets up the interim variables used to derive the overall score for "Usual Sources for Sick and Well Care" sub-component of MEDICAL HOME composite measure COMPUTE sick = 99. IF ((C4q0br = 1 or C4q0br = 3 or C4q0br = 4 or C4q0br = 5 or C4q0br = 6 or C4q0br = 8 or C4q0br =10)) sick = 1. IF (c4q0a = 2) or ((c4q0br = 2 or c4q0br = 7 or c4q0br = 9)) sick = 0. IF ((c4q0a = 6) or (c4q0a = 7)) or ((c4q0br = 96) or (c4q0br = 97)) sick = 99. EXECUTE. VARIABLE LABEL sick 'Ch. has usual place for sick care'. VALUE LABEL sick 0 'No or ER or Mexico or no one place most often' 1 'Yes' 99 'DK/REF/MISSING'. COMPUTE well = 99. IF ((c4q0d= 1) or (c4q0d = 3)) and ((sick = 1) and (c4q01 = 1)) or (c4q02r = 1 or c4q02r = 3 or c4q02r = 4 or c4q02r = 5 or c4q02r= 6 or c4q02r = 8) well = 1. IF (sick = 0) and (c4q01 = 1) well = 0. IF (c4q0d = 2) or (c4q02r = 2 or c4q02r = 7 or c4q02r = 9) well = 0. IF ((c4q0d= 1) or (c4q0d = 3)) and ((sick = 99) and (c4q01 = 1)) well = 99. IF ((c4q0d= 1) or (c4q0d = 3)) and (c4q01 = 6 or c4q01 = 7) well = 99. IF (c4q0d = 6 or c4q0d = 7) or (c4q02r = 96 or c4q02r = 97) well = 99. EXECUTE. VARIABLE LABEL well 'Ch. has usual place for well care'. VALUE LABEL well 0 'No or ER or Mexico or no one place most often' 1 'Yes' 99 'DK/REF/MISSING'.

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APPENDIX B-2

****** Step 2: Construct "Usual Sources for Sick and Well Care " sub-component of MEDICAL HOME composite measure COMPUTE usual = 99. IF (sick = 1 or sick = 99) and (well = 1 or well = 99) usual = 1. IF (sick = 0) or (well = 0 ) usual = 0. IF (well = 99) or (sick = 99) usual = 99. EXECUTE. EXECUTE . VARIABLE LABEL usual ' Usual Sources for Sick and Well Care sub-component of MEDICAL HOME composite measure’. VALUE LABEL usual 0 'Ch. does not have usual sources for sick and well care' 1 'Ch. DOES have usual sources for sick and well care' 99 'DK/REF/MISSING to all'. RECODE usual (99=SYSMIS). ***********************************Coordinated Care Component **************************************** ***EFFECTIVE CARE COORDINATION sub-component of MEDICAL HOME composite measure ****** Step 1: The following syntax sets up the interim variables used to derive the overall score for "Effective Care Coordination" sub-component of MEDICAL HOME composite measure MISSING VALUES C5Q17 C5Q09 C5Q12 (). RECODE C5Q17 C5Q09 C5Q12 (MISSING=999). EXECUTE. VALUE LABELS c5q09 1 'Never' 2 'Sometimes' 3 'Usually' 4 'Always' 6 'DK' 7 'Refused' 999 'SYSMIS'. VALUE LABELS c5q17 c5q12 0 'No' 1 'Yes' 6 'DK' 7 'Refused' 999 'SYSMIS'. ** The variable TEST09 in the code below refers to a “patch” variable created to accommodate update changes made by NCHS to the missing cases status for C5Q09 prior to releasing the public use file for the 2005/06 NS-CSHCN. SPSS users will need this patch variable in order to successfully replicate the Effective Care Coordination sub-component. Contact [email protected] to obtain a copy of the patch variable.

COMPUTE c5q09r = 99. IF (C5Q09 = 1) c5q09r = 1. IF (C5Q09 = 2) c5q09r = 2. IF (C5Q09 = 3) c5q09r = 3. IF (C5Q09 = 4) c5q09r = 4. IF (C5Q09 = 6) c5q09r = 6. IF (C5Q09 = 999) and (test09 = 0) c5q09r = 999. IF (C5Q09 = 999) and (test09 = 1) c5q09r = 99. EXECUTE.

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mailto:[email protected]

APPENDIX B-2

COMPUTE carehlp = 99. IF (C5Q12 = 1) and ( C5Q17 = 0) carehlp = 1. IF (C5Q09r = 3 or C5Q09r = 4) carehlp = 1. IF (C5Q09r = 1 or C5Q09r = 2) carehlp = 0. IF (C5q12 = 0) and (C5q17 = 0) carehlp = 2. IF (c5q12 = 999) carehlp = 2. IF (C5Q09r = 6 or C5Q09r = 7) carehlp = 99. IF (c5q12 = 6 or C5q12 = 7) and (C5q17 = 0) carehlp = 99. IF (c5q09r = 6) or (C5q17 = 6 or c5q17 = 7) carehlp = 99. IF (c5q09r = 99) carehlp = 99. EXECUTE. VAR LABEL carehlp 'Got some type of help with care coor'. VALUE LABEL carehlp 0 'Needed extra help/did not get it' 1 'Gets help with care coor' 2 'Legit skip -- <2 services or did not need extra help' 99 'DK/Ref to any or MISSING'. COMPUTE need_drcomm = 99. IF (C4q05x02a = 1 or C4q05x02c = 1) or (C4q05x05a = 1 or C4q05x05c = 1) or (C4q05x06a = 1 or C4q05x06c = 1) or (C4q05x07a = 1 or C4q05x07c = 1) or (C4q05x08a = 1 or C4q05x08c = 1) need_drcomm = 1. IF (C4q05_x02 = 0 or C4q05x02c = 0) and (C4q05_x05 = 0 or C4q05x05c = 0) and (C4q05_x06 = 0 or C4q05x06c = 0) and (C4q05_x07 = 0 or C4q05x07c = 0 or (SYSMISS (C4q05_x07))) and (C4q05_x08 = 0 or C4q05x08c = 0) need_drcomm = 0. EXECUTE. VAR LABEL need_drcomm 'Used some or all specialist care, MH, PT/OT/Speech, sub abuse, or home hlth care'. VALUE LABEL need_drcomm 1 'Used 1 or more services for dr comm denominator' 0 'Did not use services for dr comm denominator' 99 'DK/Ref'. MISSING VALUES C5q10 (). RECODE C5q10 (SYSMIS = 999). EXECUTE. VALUE LABEL c5q10 1 'Very satisfied' 2 'Somewhat satisfied' 3 'Somewhat dissatisfied' 4 'Very dissatisfied' 5 'No communication needed or wanted' 6 'DK' 7 'Refused' 999 'SYSMISS'.

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APPENDIX B-2

COMPUTE drcomm = 99. IF (C5q10 = 1) and (need_drcomm = 1) drcomm = 1. IF (C5q10 = 2 or C5q10 = 3 or C5q10 = 4) and (need_drcomm = 1) drcomm = 0. IF (C5q10 = 5) and (need_drcomm = 1) drcomm = 2. IF (C5q10 = 6 or C5q10 = 7) and (need_drcomm = 1) drcomm = 99. IF (C5q10 = 999) drcomm = 2. IF (test09 = 1 or test10 = 1) drcomm = 99. IF (need_drcomm = 0) drcomm = 2. IF (need_drcomm = 99) drcomm = 99. EXECUTE. VAR LABEL drcomm 'Level of satisfaction with dr to dr communication'. VALUE LABEL drcomm 0 'Less than very satisfied' 1 'Very satisfied' 2 'Legit skip -- no comm needed or did not use required services' 99 'DK/Ref to any'. MISSING VALUES c5q05 c5q06 (). RECODE C5q06 C5q05 (SYSMIS = 999). EXECUTE. VALUE LABEL c5q06 1 'Very satisfied' 2 'Somewhat satisfied' 3 'Somewhat dissatisfied' 4 'Very dissatisfied' 5 'No communication needed or wanted' 6 'DK' 7 'Refused' 999 'SYSMISS'. VALUE LABEL c5q05 0 'No' 1 'Yes' 6 'DK' 7 'Refused' 999 'SYSMISS'. COMPUTE othercomm = 99. IF (C5q05 = 0) othercomm = 2. IF (C5q05 = 6 or C5Q05 = 7) othercomm = 99. IF (C5q05 = 999) othercomm = 2. IF (test09 = 1) or (test10 = 1) othercomm = 99. IF (C5q06 = 1) othercomm = 1. IF (C5q06 = 2 or C5q06 = 3 or C5q06 = 4) othercomm = 0. IF (C5q06 = 6 or C5q06 = 7) othercomm = 99. EXECUTE. VAR LABEL othercomm 'If needed, level of satisfaction w/ dr comm to other providers or programs'. VALUE LABEL othercomm 0 'Less than very satisfied' 1 'Very satisfied' 2 'Legit skip -- used >2 services' 99 'DK/Ref to any'.

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APPENDIX B-2

- 156 -

****** Step 2: Construct "EFFECTIVE CARE COORDINATION " sub-component of MEDICAL HOME composite measure COMPUTE carecoor = 99. IF ((carehlp = 1) or (carehlp = 2)) and ((drcomm = 1) or (drcomm = 2)) and ((othercomm = 1) or (othercomm = 2)) carecoor = 1. IF (carehlp = 0) or (drcomm = 0) or (othercomm = 0) carecoor = 0. IF (carehlp = 2) and (drcomm = 2) and (othercomm = 2) carecoor = 2. IF (carehlp = 99) or (drcomm = 99) or (othercomm = 99) carecoor = 99. EXECUTE. VAR LABEL carecoor 'Effective Care Coordination sub-component of MEDICAL HOME composite measure'. VALUE LABEL carecoor 0 'Did not meet 1 or more needed elements of care coor' 1'Met all needed components of care coor or legitimate skip' 2 'Legit skip -- no one helps with care coor or >2 services used past 12 mos' 99 'DK/REF/MISSING to any'. RECODE carecoor (99=SYSMIS). ******************************** MEDICAL HOME COMPOSITE MEASURE************************************ ***The following code uses the five sub-components created above to derive the MEDICAL HOME composite measure using the ON EVERY scoring approach COMPUTE mh_comp= 999. IF (pdn = 1) and (usual = 1) and (carecoor = 1 or carecoor = 2) and (noreferpblm = 1 or noreferpblm = 2) and (famcent = 1 or famcent = 2) mh_comp = 1. IF (pdn = 0) or (usual = 0) or (carecoor = 0) or (noreferpblm = 0) or (famcent = 0) mh_comp = 0. IF ((SYSMIS (pdn)) or (SYSMIS (usual)) or (SYSMIS (famcent)) or (SYSMIS (noreferpblm)) or (SYSMIS (carecoor))) mh_comp =99. EXECUTE. VAR LABEL mh_comp '% CSHCN receiving coordinated, ongoing, comprehensive care within a medical home' . VALUE LABEL mh_comp 0 'Care DOES NOT meet medical home criteria' 1 'Care MEETS medical home criteria' 99 'DK/Ref to any'. MISSING VALUES mh_comp (99). FORMATS mh_comp(f2.0).

APPENDIX B-2




SPSS scoring program

APPENDIX B-2


pdn Personal Doctor or Nurse sub-component of MEDICAL HOME compositemeasure

2300 5.6 5.7 5.7

38358 94.2 94.3 100.0

40658 99.8 100.065 .2

40723 100.0

0 Do not have apersonal dr or nurse1 Yes, have apersonal dr or nurseTotal

Valid

SystemMissingTotal


Percent


time Drs/other health providers spend enough time (c6q02 recoded)

7478 18.4 18.4 18.431287 76.8 76.8 95.2

1808 4.4 4.4 99.6150 .4 .4 100.0

40723 100.0 100.0

0 Never/sometimes1 Usually/always2 No dr visits past 12 mos99 DK/RefTotal


CumulativePercent

listen Drs/other health providers listen well (c6q03 recoded)

3990 9.8 9.8 9.834819 85.5 85.5 95.3

1808 4.4 4.4 99.7106 .3 .3 100.0

40723 100.0 100.0



CumulativePercent

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APPENDIX B-2

sensitiv Drs/other health providers sensitive to family values/customs (c6q04recoded)

3809 9.4 9.4 9.434746 85.3 85.3 94.7

1808 4.4 4.4 99.1360 .9 .9 100.0

40723 100.0 100.0



CumulativePercent

info Drs/other health providers provide needed information (c6q05 recoded)

6406 15.7 15.7 15.732367 79.5 79.5 95.2

1808 4.4 4.4 99.7142 .3 .3 100.0

40723 100.0 100.0



CumulativePercent

partner Drs/other health providers make family feel like a partner (c6q06 recoded)

4445 10.9 10.9 10.934380 84.4 84.4 95.3

1808 4.4 4.4 99.890 .2 .2 100.0

40723 100.0 100.0



CumulativePercent

interpret Able to get interpreter if needed during ch's dr visits

172 .4 .4 .4248 .6 .6 1.0

40302 99.0 99.0 100.0

1 .0 .0 100.040723 100.0 100.0

0 Never/sometimes1 Usually/always2 Does not needinterpreter99 DK/RefTotal


CumulativePercent

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APPENDIX B-2


famcent Family-Centered Care sub-component of MEDICAL HOME compositemeasure

12332 30.3 30.8 30.825910 63.6 64.7 95.5

1808 4.4 4.5 100.0

40050 98.3 100.0673 1.7

40723 100.0

0 Does NOT have fcc1 Yes, has fcc2 Legitimate skip - nodr visit past 12 mosTotal

Valid

SystemMissingTotal


Percent


norefprb Getting Needed Referrals sub-component of MEDICAL HOMEcomposite measure

2683 6.6 6.6 6.6

10675 26.2 26.4 33.0

27101 66.5 67.0 100.040459 99.4 100.0

264 .640723 100.0

0 Big or small problemgetting referral, whenneeded1 No problems gettingreferral, when needed2Total

Valid

SystemMissingTotal


Percent

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APPENDIX B-2


sick Ch. has usual place for sick care

2108 5.2 5.2 5.2

38506 94.6 94.6 99.7109 .3 .3 100.0

40723 100.0 100.0

0 No or ER or Mexico orno one place most often1 Yes99 DK/REF/MISSINGTotal


CumulativePercent

well Ch. has usual place for well care

1118 2.7 2.7 2.7

39508 97.0 97.0 99.897 .2 .2 100.0

40723 100.0 100.0

0 No or ER or Mexico orno one place most often1 Yes99 DK/REF/MISSINGTotal


CumulativePercent


usual Usual Sources for Sick and Well Care sub-component of MEDICALHOME composite measure

2721 6.7 6.7 6.7

37830 92.9 93.3 100.0

40551 99.6 100.0172 .4

40723 100.0

0 Ch. does not haveusual sources forsick and well care1 Ch. DOES haveusual sources forsick and well careTotal

Valid

SystemMissingTotal


Percent

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APPENDIX B-2


c5q09r

2796 6.9 6.9 6.92755 6.8 6.8 13.61456 3.6 3.6 17.2

24 .1 .1 17.372 .2 .2 17.4

33620 82.6 82.6 100.040723 100.0 100.0

123699999Total


CumulativePercent

carehlp Got some type of help with care coor

5551 13.6 13.6 13.6

12252 30.1 30.1 43.7

22619 55.5 55.5 99.3

301 .7 .7 100.0

40723 100.0 100.0

0 Needed extra help/didnot get it1 Gets help with care coor2 Legit skip -- <2 servicesor did not need extra help99 DK/Ref to any orMISSINGTotal


CumulativePercent

need_drcomm Used some or all specialist care, MH, PT/OT/Speech, sub abuse,or home hlth care

13466 33.1 33.1 33.1

27073 66.5 66.5 99.5

184 .5 .5 100.040723 100.0 100.0

0 Did not use servicesfor dr comm denominator1 Used 1 or moreservices for dr commdenominator99 DK/RefTotal


CumulativePercent

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APPENDIX B-2

drcomm Level of satisfaction with dr to dr communication

9636 23.7 23.7 23.717070 41.9 41.9 65.6

13749 33.8 33.8 99.3

268 .7 .7 100.040723 100.0 100.0

0 Less than very satisfied1 Very satisfied2 Legit skip -- no commneeded or did not userequired services99 DK/Ref to anyTotal


CumulativePercent

othercomm If needed, level of satisfaction w/ dr comm to other providers orprograms

5387 13.2 13.2 13.25690 14.0 14.0 27.2

29256 71.8 71.8 99.0

390 1.0 1.0 100.040723 100.0 100.0

0 Less than very satisfied1 Very satisfied2 Legit skip -- used >2services99 DK/Ref to anyTotal


CumulativePercent


carecoor Effective Care Coordination sub-component of MEDICAL HOMEcomposite measure

12576 30.9 31.6 31.6

18395 45.2 46.2 77.8

8862 21.8 22.2 100.0

39833 97.8 100.0890 2.2

40723 100.0

0 Did not meet 1 ormore neededelements of care coor1 Met all neededcomponents of carecoor or legitimate skip2 Legit skip -- no onehelps with care cooror >2 services usedpast 12 mosTotal

Valid

SystemMissingTotal


Percent

- 164 -

APPENDIX B-2

- 165 -


mh_comp % CSHCN receiving coordinated, ongoing, comprehensive care withina medical home

19909 48.9 51.2 51.2

18977 46.6 48.8 100.0

38886 95.5 100.01837 4.5

40723 100.0

0 Care DOES NOT meetmedical home criteria1 Care MEETS medicalhome criteriaTotal

Valid

99 DK/Ref to anyMissingTotal


Percent

APPENDIX B-2



APPENDIX B-2




SECTION 4: ACCESS TO CARE -- UTILIZATION AND UNMET NEEDS



(1) YES (2) THERE IS NO PLACE [SKIP TO C4Q0D] (3) THERE IS MORE THAN ONE PLACE (6) DON’T KNOW [SKIP TO C4Q0D] (7) REFUSED [SKIP TO C4Q0D] (01) DOCTOR’S OFFICE [SKIP TO C4Q0D] (02) HOSPITAL EMERGENCY ROOM [SKIP TO C4Q0D] (03) HOSPITAL OUTPATIENT DEPARTMENT [SKIP TO C4Q0D] (04) CLINIC OR HEALTH CENTER [SKIP TO C4Q0D] (05) SCHOOL (NURSE’S OFFICE, ATHLETIC TRAINER’S OFFICE, ETC) [SKIP TO C4Q0D] (06) FRIEND/RELATIVE [SKIP TO C4Q0D] (07) MEXICO/OTHER LOCATIONS OUT OF US [SKIP TO C4Q0D] (08) SOME OTHER PLACE [SKIP TO C4Q0C] (09) DOES NOT GO TO ONE PLACE MOST OFTEN

[SKIP TO C4Q0D] (96) DON’T KNOW [SKIP TO C4Q0D] (97) REFUSED [SKIP TO C4Q0D]

C4q0d Is there a place that (S.C.) USUALLY goes when (he/she) needs routine preventive care, such as a physical examination or well-child check-up?

If Yes to C4q0d: C4q01 Is the [place selected in C4q0b] that (S.C.) goes to when (he/she) is sick the same place (S.C.) usually goes for routine preventive care?

(1) YES (2) THERE IS NO PLACE [SKIP TO C4Q02A] (3) THERE IS MORE THAN ONE PLACE (6) DON’T KNOW [SKIP TO C4Q02A] (7) REFUSED [SKIP TO C4Q02A] (1) YES [SKIP TO C4Q02A] (2) NO (6) DON’T KNOW [SKIP TO C4Q02A] (7) REFUSED [SKIP TO C4Q02A]


(01) DOCTOR’S OFFICE (02) HOSPITAL EMERGENCY ROOM (03) HOSPITAL OUTPATIENT DEPARTMENT (04) CLINIC OR HEALTH CENTER (05) SCHOOL (NURSE’S OFFICE, ATHLETIC TRAINER’S OFFICE, ETC) (06) FRIEND/RELATIVE (07) MEXICO/OTHER LOCATIONS OUT OF US (08) SOME OTHER PLACE [SKIP TO C4Q02_1] (09) DOES NOT GO TO ONE PLACE MOST OFTEN (96) DON’T KNOW (97) REFUSED

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APPENDIX B-2




C4q02a A personal doctor or nurse is a health professional who knows your child well and is familiar with your child’s health history. This can be a general doctor, a pediatrician, a specialist doctor, a nurse practitioner, or a physician’s assistant. Do you have one or more persons you think of as (S.C.)’s personal doctor or nurse?

(1) YES, ONE PERSON (2) YES, MORE THAN ONE PERSON (3) NO [SKIP TO C4Q03] (6) DON’T KNOW [SKIP TO C4Q03] (7) REFUSED [SKIP TO C4Q03]


C5q11 During the past 12 months, did (S.C.) need a referral to see any doctors or receive any services? If Yes to C5q11:

C4q07 Was getting referrals a big problem, a small problem, or not a problem?

(1) YES (2) NO [SKIP TO C5Q12] (6) DON’T KNOW [SKIP TO C5Q12] (7) REFUSED [SKIP TO C5Q12] (1) Big problem (2) Small problem (3) Not a problem (6) DON’T KNOW (7) REFUSED

C5q17 During the past 12 months, have you felt that you could have used extra help arranging or coordinating (S.C.)’s care among these different health care providers or services? If Yes to C5q17:

C5q09 During the past 12 months, how often did you get as much help as you wanted with arranging or coordinating (S.C.)’s care?


(1) Never (2) Sometimes (3) Usually (6) DON’T KNOW (7) REFUSED

C5q10 Overall, are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied with the communication among (S.C.)’s doctors and other health care providers?


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APPENDIX B-2




C5q05 Do (S.C.)’s doctors or other health care providers need to communicate with (his/her) school, early intervention program, child care providers, vocational education or rehabilitation program? If Yes to C5q05:

C5q06 Overall, are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied with that communication?


(1) Very satisfied (2) Somewhat satisfied (3) Somewhat dissatisfied (4) Very dissatisfied (6) DON’T KNOW (7) REFUSED

SECTION 6A: FAMILY CENTERED CARE









- 171 -

APPENDIX B-2

- 172 -






S5q13 During the past 12 months, did you (or S.C.) need an interpreter to help speak with (his/her) doctors or other health care providers?

If Yes to S5q13:

S5q13a When you (or S.C.) needed an interpreter, how often were you able to get someone other than a family member to help you speak with (his/her) doctors or other health care providers?

(1) YES [SKIP TO S5Q13A] (2) NO [SKIP TO C6Q07] (6) DON’T KNOW [SKIP TO C6Q07] (7) REFUSED [SKIP TO C6Q07]


APPENDIX C-1

2003 NATIONAL SURVEY OF CHILDREN’S HEALTH

APPENDIX C_1: SAS User Resources


APPENDIX C-1


Weighted Estimates for Medical Home composite measure, the six sub-component scores and associated

interim variables

APPENDIX C-1

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2003 National Survey of Children’s Health (NSCH) Weighted estimates* for Medical Home composite measure, the six sub-component scores


2003 NSCH

% all children ages 0-17*

% CSHCN only ages 0-17* NOTES*




83.3

90.0

1) Asked for all children

ACCESSIBLE -- --

FAMILY CENTERED 2) Child’s personal doctor or nurse does both of the following:

a. Usually or always spends enough time with child and parent b. Usually or always explains things so parent and child understand AND c. IF needed, interpreter services are usually or always available

65.2

66.2 77.6

0.1

73.4

75.1 84.1

0.8

2) Family centered care questions are asked only for children with at least one personal doctor or nurse

CONTINUOUS -- --

COMPREHENSIVE 3) Preventive care visit during past 12 months

4) IF needed, consistent access to urgent care and/or phone advice from personal doctor or nurse (PDN)

a. Usually or always gets urgently needed care from PDN b. Usually or always gets needed phone advice from PDN

5) IF needed, no problems getting specialist care and/or specialized health services or equipment

a. No problems getting needed care from specialist doctor(s) b. No problems getting needed specialized health services or

equipment

77.8

40.1

23.2 32.6

19.2

15.1 5.7

86.5

55.3

36.8 46.9

42.7

33.0 18.1

3) Asked for all children 4) & 5) Asked only for children with at least one personal doctor or nurse AND need for the specific type of care being assessed


a. Personal doctor or nurse usually or always follows up with family after child gets needed care from a specialist doctor or doctors

b. Personal doctor or nurse usually or always follows up with the family after child gets needed specialized health services or equipment

12.9 12.0

4.3

29.4 27.6

15.3

6) Asked only for children with at least one personal doctor or nurse AND a need for specialist care or specialized services/equip or both during the past 12 months



* All estimated percentages are weighted to represent the U.S. non-institutionalized child population ages 0-17 years † Questions assessing these concepts are combined under the Family Centered Care component for scoring purposes.



SAS scoring program variable names for the six sub-component scores and associated interim variables used to

derive the Medical Home composite measure

Measuring Medical Home using Data Elements from the 2003 National Survey of Children’s Health (NSCH)

SAS scoring program variable names for the six sub-component scores and associated interim variables used to derive the Medical Home composite measure

2003 NSCH

SAS Variable names

Survey items or variables used to construct:

MEDICAL HOME COMPOSITE MEASURE: MH_COMP [S5Q01; PDNCOM_2; PC_2; CARE_2; ACC_2; COOR_2]

ESTABLISHED RELATIONSHIP WITH A SPECIFIC PROVIDER 1) Child has at least one “personal doctor or nurse”

S5Q01 [S5q01]

ACCESSIBLE --



PDNCOM_2

ADEQTIME EXPLAIN INTERPRT

[ADEQTIME; EXPLAIN; INTERPRT] S5q02 S5q04

S5q13; S5q13a

CONTINUOUS --



a. Usually or always able to get urgently needed care from PDN b. Usually or always able to get needed phone advice from PDN


a. No problems getting needed care from specialist doctor(s) b. No problems getting needed specialized health services or equipment

PC_2 CARE_2 GETCARE PHONEHLP ACC_2 SPECIAL SERVICES

[S4q03r]

[GETCARE; PHONEHLP]

S5q06; S5q06a S5q07; S5q07a

[SPECIALIST; SERVICES]

S5q09; S5q09a S5q10; S5q10a



COOR_2 [FU_SPEC; FU_SERVE] FU_SPEC S5q09c


FU_SERVE

S5q10c



† Questions assessing these concepts are combined under the Family Centered Care component for scoring purposes. -- Not assessed by the survey.

APPENDIX C-1

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APPENDIX C-1

MEDICAL HOME Composite Measure

How many children/youth receive health care that meets the American Academy of Pediatrics (AAP) definition of medical home?

4.8 Medical Home

S4Q01 and S4Q03; SA5Q01 – S5Q13a Survey Items Used

Numerator Children/youth meeting scoring criteria for having a Medical Home

Denominator Children/youth ages 0–17 years

Description Percent of children/youth ages 0–17 who have a primary care provider (e.g. personal doctor or nurse) AND one or more preventive care visits during past 12 months AND consistently received all needed care from their primary care provider.


The medical home composite measure and its sub-components are designed to operationalize the American Academy of Pediatrics (AAP) definition of “medical home.” According to this definition, all children ideally should have access to “accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective care within a medical home.”

For additional information about the questions in the medical home section (Section 5) of the 2003 National Survey of Children’s Health, go to: www.cdc.gov/nchs/data/slaits/NSCH_Methodology_Report.pdf

We are indebted to Deborah Rosenberg, PhD, Research Associate Professor of Epidemiology, School of Public Health, University of Illinois at Chicago, for translating the SPSS Medical Home scoring program developed by CAHMI into SAS format.


Formats

**** The following program sets the formats for the medical home sub-components, associated interim variables, and the overall medical home composite measure created by the SAS scoring program proc format library = library name; value s5q0one /*format for PDN sub-component - S5Q01*/ 0 = 'No' 1 = 'Yes' 6 = 'DK' 7 = 'Refused'; value pc_tw /*format for: PREVENTIVE CARE VISIT sub-component - pc_2*/ 0 = 'Unknown' 1 = 'No preventive care visit' 2 = 'One or more prev care visits'; value subcomp /*format for HOW OFTEN sub-components*/ 0 = 'Less than usually/always' 1 = 'Usually/always'; value acc_tw /*format for ACC_2 sub-component*/ 0 = 'Problems' 1 = 'No problems';

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APPENDIX C-1

value mh_yn /*format for MEDICAL HOME composite measure WITHOUT prev care visit added*/ 0 = 'No PDN or has PDN & <75pts on 1 or more needed sub-comps' 1 = 'Has PDN & 75pts or above on every needed sub-comp'; value mh_comp /*format for MEDICAL HOME composite measure*/ 1 = 'Care MEETS MEDICAL HOME definition' 2 = 'Care DOES NOT meet MEDICAL HOME definition'; run;

Scoring program

*********************************Personal Doctor or Nurse (PDN) Component******************************** /**PERSONAL DOCTOR or NURSE sub-component of MEDICAL HOME composite measure**/ **** Note: Use question S5Q01*** *************************************Family Centered Care Component ************************************ /**Communication with PDN sub-component of MEDICAL HOME composite measure**/ /**Step 1: Set up the interim variables used to derive the Communication with PDN sub-component of the MEDICAL HOME composite measure**/ adeqtime = .; IF s5q02 = .L then adeqtime =.L; if s5q02 eq 1 then adeqtime = 0; if s5q02 eq 2 then adeqtime = 25; if s5q02 eq 3 then adeqtime = 75; if s5q02 eq 4 then adeqtime = 100; if s5q02 eq 6 then adeqtime = 6; if s5q02 eq 7 then adeqtime = 7; if adeqtime in (6,7) then adeqtime = .; label adeqtime = 'How often does PDN spend enough time with them'; explain = .; if s5q04 eq 1 then explain = 0; if s5q04 eq 2 then explain = 25; if s5q04 eq 3 then explain = 75; if s5q04 eq 4 then explain = 100; if s5q04 eq 6 then explain = 6; if s5q04 eq 7 then explain = 7; if s5q04 in (6,7) then explain = .; label explain = 'How often does PDN explain things so parent or ch understands'; interprt = .; if s5q01 eq 1 and s5q13a eq 1 then interprt = 0; if s5q01 eq 1 and s5q13a eq 2 then interprt = 25; if s5q01 eq 1 and s5q13a eq 3 then interprt = 75; if s5q01 eq 1 and s5q13a eq 4 then interprt = 100; if s5q01 eq 1 and s5q13a eq 6 then interprt = 6; if s5q01 eq 1 and s5q13a eq 7 then interprt = 7; if interprt eq 6 then interprt = .; if interprt eq 7 then interprt = .; label interprt = "How often able to get needed interpreter services";

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APPENDIX C-1

/**Step 2: Construct the "Communication with PDN" sub-component of MEDICAL HOME composite measure**/ pdn_cnt = 0; if adeqtime in (0,25,75,100) then pdn_cnt = pdn_cnt + 1; if explain in (0,25,75,100) then pdn_cnt = pdn_cnt + 1; if interprt in (0,25,75,100) then pdn_cnt = pdn_cnt + 1; label pdn_cnt = "Number of PDN communication elements needed "; pdn_sum = sum(adeqtime,explain,interprt); label pdn_sum = "Total points across all needed elements of comm w/ PDN"; if pdn_cnt ne 0 then do; pdn100 = pdn_sum / pdn_cnt; end; if pdn_cnt eq 0 then do; pdn100 = .; end; label pdn100 = "Average score for communication with PDN sub-component of MEDICAL HOME"; pdncom_2 = .; if pdn100 > = 0 and pdn100 < = 67 then pdncom_2 = 0; if pdn100 > = 75 then pdncom_2 = 1; label pdncom_2 = "PDN communication sub-component for MEDICAL HOME composite measure"; *************************************Comprehensive Care Component ************************************ /**PREVENTIVE CARE VISIT sub-component of MEDICAL HOME composite measure**/ pc_2 =0.; if s4q01 eq 0 or s4q03r eq 0 then pc_2 = 1; if s4q03r > = 1 then pc_2 = 2; if s4q03r in (96,97) then pc_2 = 0; label pc_2 = 'Preventive care visit sub-component'; /**GETTING NEEDED CARE/ADVICE sub-component of MEDICAL HOME composite measure**/ /**Step 1: The following syntax sets up the interim variables used to derive the "Getting needed care from PDN" sub-component of MEDICAL HOME composite measure**/ phonehlp = .; if s5q06a eq 1 then phonehlp = 0; if s5q06a eq 2 then phonehlp = 25; if s5q06a eq 3 then phonehlp = 75; if s5q06a eq 4 then phonehlp = 100; if s5q06a eq 6 then phonehlp = 6; if s5q06a eq 7 then phonehlp = 7; if s5q06a in (6,7) then phonehlp = .; label phonehlp = "How often get advice over phone from ch's PDN when needed"; getcare = .; if s5q07a eq 1 then getcare = 0; if s5q07a eq 2 then getcare = 25; if s5q07a eq 3 then getcare = 75; if s5q07a eq 4 then getcare = 100; if s5q07a eq 6 then getcare = 6; if s5q07a eq 7 then getcare = 7; if s5q07a in (6,7) then getcare = .; label getcare = "How often get needed care right away from ch's PDN";

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APPENDIX C-1

/**Step 2: Construct the "GETTING NEEDED CARE/ADVICE" sub-component of MEDICAL HOME composite measure**/ care_cnt = 0; if phonehlp in (0,25,75,100) then care_cnt = care_cnt + 1; if getcare in (0,25,75,100) then care_cnt = care_cnt + 1; label care_cnt = "Number of getting care elements needed"; care_sum = sum(phonehlp,getcare); label care_sum = "Total points across needed elements of getting phone or urgent care from PDN"; if care_cnt ne 0 then do; care100 = care_sum / care_cnt; end; if care_cnt eq 0 then do; care100 = .; end; label care100 = "Average score for Getting Needed Care sub-component of MEDICAL HOME"; care_2 = .; if care100 > = 0 and care100 < = 67 then care_2 = 0; if care100 > = 75 then care_2 = 1; label care_2 = "Getting Needed Care sub-component for MEDICAL HOME composite measure"; /**ACCESS to SPECIALIST CARE & SERVICES sub-component of MEDICAL HOME composite measure**/ /**Step 1: The following syntax sets up the interim variables used to derive the "ACCESS to SPECIALIST CARE & SERVICES" sub-component of MEDICAL HOME composite measure**/ special = .; if s5q09a eq 1 then special = 0; if s5q09a eq 2 then special = 25; if s5q09a eq 3 then special = 75; if s5q09a eq 4 then special = 100; if s5q09a eq 6 then special = 6; if s5q09a eq 7 then special = 7; if s5q09a in (6,7) then special = .; label special = "Problems getting needed care from specialist dr."; services = .; if s5q10a eq 1 then services = 0; if s5q10a eq 2 then services = 25; if s5q10a eq 3 then services = 75; if s5q10a eq 4 then services = 100; if s5q10a eq 6 then services = 6; if s5q10a eq 7 then services = 7; if s5q10a in (6,7) then services = .; label services = "Problems getting needed services or equip"; /**Step 2: Construct the "ACCESS to SPECIALIST CARE & SERVICES" sub-component of MEDICAL HOME composite measure**/ acc_cnt = 0; if special in (0,25,75,100) then acc_cnt = acc_cnt + 1; if services in (0,25,75,100) then acc_cnt = acc_cnt + 1; label acc_cnt = "Number of access to care elements needed "; acc_sum = sum(special,services); label acc_sum = "Total points across accessing needed specialist care/services elements of MEDICAL HOME";

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if acc_cnt ne 0 then do; acc100 = acc_sum / acc_cnt; end; if acc_cnt eq 0 then do; acc100 = .; end; label acc100 = "Average score for access to needed specialist care/services sub-component of MEDICAL HOME"; acc_2 = .; if acc100 > = 0 and acc100 < = 67 then acc_2 = 0; if acc100 > = 75 then acc_2 = 1; label acc_2 = "Access to needed specialist care/services sub-component for Med Home composite measure"; ***********************************Coordinated Care Component **************************************** /**FOLLOW UP w/ FAMILY sub-component of MEDICAL HOME composite measure**/ /**Step 1: Set up the interim variables used to derive the FOLLOW UP w/ FAMILY sub-component of the MEDICAL HOME composite measure**/ fu_spec = .; if s5q09c eq 1 then fu_spec = 0; if s5q09c eq 2 then fu_spec = 25; if s5q09c eq 3 then fu_spec = 75; if s5q09c eq 4 then fu_spec = 100; if s5q09c eq 6 then fu_spec = 6; if s5q09c eq 7 then fu_spec = 7; if s5q09c in (6,7) then fu_spec = .; label fu_spec = "How often PDN follows up w/ family after specialist visit"; fu_serve = .; if s5q10c eq 1 then fu_serve = 0; if s5q10c eq 2 then fu_serve = 25; if s5q10c eq 3 then fu_serve = 75; if s5q10c eq 4 then fu_serve = 100; if s5q10c eq 6 then fu_serve = 6; if s5q10c eq 7 then fu_serve = 7; if s5q10c in (6,7) then fu_serve = .; label fu_serve = "How often PDN follows up w/ family after special services/equip"; /**Step2: Construct the "FOLLOW UP w/ FAMILY" sub-component of MEDICAL HOME composite measure;**/ coor_cnt = 0; if fu_spec in (0,25,75,100) then coor_cnt = coor_cnt + 1; if fu_serve in (0,25,75,100) then coor_cnt = coor_cnt + 1; label coor_cnt = "Number of coor care follow up components"; coor_sum = sum(fu_spec,fu_serve); label coor_sum = "Total points on needed follow up care elements of MEDICAL HOME"; if coor_cnt ne 0 then do; coor100 = coor_sum / coor_cnt; end; if coor_cnt eq 0 then do; coor100 = .; end; label coor100 = "Average score on follow up care from PDN coor care component of MEDICAL HOME"; coor_2 = .; if coor100 > = 0 and coor100 < = 67 then coor_2 = 0; if coor100 > = 75 then coor_2 = 1; label coor_2 = "Coor care component for Med Home composite measure";

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APPENDIX C-1

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***********************************MEDICAL HOME Composite Measure**************************************** The following code uses the 6 sub-components created above to derive the MEDICAL HOME composite measure using 75pts or above on EVERY needed sub-component scoring approach**/ /**Step1: Construct MEDICAL HOME composite measure WITHOUT preventive care visit criterion**/ mh_cnt = 0; if pdncom_2 in (0,1) then mh_cnt = mh_cnt + 1; if care_2 in (0,1) then mh_cnt = mh_cnt + 1; if acc_2 in (0,1) then mh_cnt = mh_cnt + 1; if coor_2 in (0,1) then mh_cnt = mh_cnt + 1; label mh_cnt = "Number of needed components of Medical Home care"; mh_cnt2 = 0; if pdncom_2 in (1) then mh_cnt2 = mh_cnt2 + 1; if care_2 in (1) then mh_cnt2 = mh_cnt2 + 1; if acc_2 in (1) then mh_cnt2 = mh_cnt2 + 1; if coor_2 in (1) then mh_cnt2 = mh_cnt2 + 1; label mh_cnt2 = "Number needed Medical Home sub-components with score of 75pts or above"; if mh_cnt ne 0 then do; mh2_scor = (mh_cnt2 / mh_cnt) * 100; end; if mh_cnt eq 0 then do; mh2_scor = .; end; label mh2_scor = "Percent of needed MEDICAL HOME sub-components with score 75pts or above"; mh_yn = 0; if mh2_scor eq 100 then mh_yn = 1; if mh2_scor < 100 and mh2_scor >=0 then mh_yn = 0; if mh2_scor eq . and (s5q01 eq 6 or s5q01 eq 7) then mh_yn = 9; if mh_yn eq 9 then mh_yn =.; label mh_yn = "% meet MED HOME threshold of 75pt or above on EVERY needed component of care-prev care not included"; /**Step2: Construct MEDICAL HOME composite measure with at least 1 preventive care visit/last 12 mos criteria added**/ mh_comp = .; if mh_yn eq 0 and pc_2 > = 1 then mh_comp = 0; if mh_yn eq 1 and pc_2 eq 1 then mh_comp = 0; if mh_yn eq 1 and pc_2 eq 2 then mh_comp = 1; if mh_comp eq 0 then mh_comp = 2; /*RECODE from 0,1 to 1,2*/ label mh_comp = "How many children/youth (ages 0-17) receive health care meeting the AAP definition of medical home?"; run; PROC FREQ DATA = dataset name; FORMAT S5q01 s5q0one. pc_2 pc_tw. pdncom_2 subcomp. care_2 subcomp. coor_2 subcomp. acc_2 acc_tw. mh_yn mh_yn. mh_comp mh_comp.; TABLES S5q01 pc_2 pdncom_2 care_2 coor_2 acc_2 mh_yn mh_comp ; run;

APPENDIX C-1



and composite measure generated by the SAS scoring program

190

APPENDIX C-1

Personal Doctor or Nurse (PDN) Component **PDN sub-component score (S5Q01)

Do you have one or more persons you think of as [S.C.]'s personal doctor or nurse?

Cumulative Cumulative S5Q01 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 14568 14.23 14568 14.23 1 87491 85.48 102059 99.71 6 267 0.26 102326 99.97 7 26 0.03 102352 100.00 Frequency Missing = 1

Family Centered Care Component **Interim variables for Communication with PDN sub-component

How often does PDN spend enough time with them Cumulative Cumulative adeqtime Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 2006 2.31 2006 2.31 25 13379 15.39 15385 17.70 75 17414 20.04 32799 37.74 100 54117 62.26 86916 100.00 Frequency Missing = 15437 How often does PDN explain things so parent or ch understands Cumulative Cumulative explain Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 756 0.87 756 0.87 25 3644 4.18 4400 5.05 75 12003 13.77 16403 18.81 100 70790 81.19 87193 100.00 Frequency Missing = 15160

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APPENDIX C-1

How often able to get needed interpreter services Cumulative Cumulative interprt Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 138 12.33 138 12.33 25 335 29.94 473 42.27 75 99 8.85 572 51.12 100 547 48.88 1119 100.00 Frequency Missing = 101234 Number of PDN communication elements needed Cumulative Cumulative pdn_cnt Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 14966 14.62 14966 14.62 1 643 0.63 15609 15.25 2 85647 83.68 101256 98.93 3 1097 1.07 102353 100.00 Total points across all needed elements of comm w/ PDN Cumulative Cumulative pdn_sum Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 333 0.38 333 0.38 25 711 0.81 1044 1.19 50 1983 2.27 3027 3.46 75 545 0.62 3572 4.09 100 5070 5.80 8642 9.89 125 8341 9.54 16983 19.43 150 5286 6.05 22269 25.48 175 14730 16.86 36999 42.34 200 49820 57.01 86819 99.35 225 203 0.23 87022 99.58 250 34 0.04 87056 99.62 275 100 0.11 87156 99.74 300 231 0.26 87387 100.00 Frequency Missing = 14966

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APPENDIX C-1

Average score for communication with PDN sub-component of MEDICAL HOME composite measure

Cumulative Cumulative pdn100 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 333 0.38 333 0.38 8.3 10 0.01 343 0.39 12.5 622 0.71 965 1.10 16.7 34 0.04 999 1.14 25.0 2087 2.39 3086 3.53 33.3 22 0.03 3108 3.56 37.5 367 0.42 3475 3.98 41.6 93 0.11 3568 4.08 50.0 4759 5.45 8327 9.53 58.3 42 0.05 8369 9.58 62.5 8248 9.44 16617 19.02 66.7 143 0.16 16760 19.18 75.0 5486 6.28 22246 25.46 83.3 34 0.04 22280 25.50 87.5 14688 16.81 36968 42.30 91.7 100 0.11 37068 42.42 100.0 50319 57.58 87387 100.00 Frequency Missing = 14966

**Communication with PDN sub-component score (PDNCOM_2)

PDN communication sub-component for MEDICAL HOME composite measure Cumulative Cumulative pdncom_2 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 16760 19.18 16760 19.18 1 70627 80.82 87387 100.00 Frequency Missing = 14966

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APPENDIX C-1

Comprehensive Care Component ** Preventive Medical Care Visit sub-component score (CARE_2)

Preventive care visit sub-component Cumulative Cumulative pc_2 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 908 0.89 908 0.89 1 22255 21.74 23163 22.63 2 79190 77.37 102353 100.00

How often get advice over phone from ch's PDN when needed Cumulative Cumulative phonehlp Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 362 0.94 362 0.94 25 1682 4.35 2044 5.28 75 5416 14.00 7460 19.29 100 31221 80.71 38681 100.00 Frequency Missing = 63672 How often get needed care right away from ch's PDN Cumulative Cumulative getcare Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 553 2.02 553 2.02 25 1572 5.75 2125 7.78 75 5120 18.74 7245 26.52 100 20074 73.48 27319 100.00 Frequency Missing = 75034

**Interim variables Getting Needed Care sub-component

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APPENDIX C-1

Number of getting care elements needed Cumulative Cumulative care_cnt Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 54335 53.09 54335 53.09 1 30036 29.35 84371 82.43 2 17982 17.57 102353 100.00

Total points across needed elements of getting phone or urgent care from PDN

Cumulative Cumulative care_sum Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 472 0.98 472 0.98 25 1566 3.26 2038 4.24 50 292 0.61 2330 4.85 75 4693 9.77 7023 14.63 100 24205 50.41 31228 65.03 125 647 1.35 31875 66.38 150 1091 2.27 32966 68.65 175 3204 6.67 36170 75.33 200 11848 24.67 48018 100.00 Frequency Missing = 54335

Average score for Getting Needed Care sub-component of MEDICAL HOME composite measure

Cumulative Cumulative care100 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 472 0.98 472 0.98 12.5 132 0.27 604 1.26 25.0 1726 3.59 2330 4.85 37.5 92 0.19 2422 5.04 50.0 609 1.27 3031 6.31 62.5 647 1.35 3678 7.66 75.0 5692 11.85 9370 19.51 87.5 3204 6.67 12574 26.19 100.0 35444 73.81 48018 100.00 Frequency Missing = 54335

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APPENDIX C-1

**Getting Needed Care sub-component score (CARE_2)

Getting Needed Care sub-component for MEDICAL HOME composite measure Cumulative Cumulative care_2 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 3678 7.66 3678 7.66 1 44340 92.34 48018 100.00 Frequency Missing = 54335

**Interim variables Access to Specialist Care & Services sub-component

Problems getting needed care from specialist dr. Cumulative Cumulative special Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 966 4.48 966 4.48 25 1593 7.39 2559 11.88 75 2118 9.83 4677 21.71 100 16870 78.29 21547 100.00 Frequency Missing = 80806 Problems getting needed services or equip Cumulative Cumulative services Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 638 6.96 638 6.96 25 782 8.54 1420 15.50 75 1036 11.31 2456 26.81 100 6705 73.19 9161 100.00 Frequency Missing = 93192

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APPENDIX C-1

Number of access to care elements needed Cumulative Cumulative acc_cnt Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 77340 75.56 77340 75.56 1 19318 18.87 96658 94.44 2 5695 5.56 102353 100.00

Total points across accessing needed specialist care/services elements of MEDICAL HOME

Cumulative Cumulative acc_sum Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 918 3.67 918 3.67 25 1456 5.82 2374 9.49 50 146 0.58 2520 10.07 75 1884 7.53 4404 17.61 100 15920 63.65 20324 81.25 125 453 1.81 20777 83.06 150 208 0.83 20985 83.90 175 680 2.72 21665 86.61 200 3348 13.39 25013 100.00 Frequency Missing = 77340

Average score for access to needed specialist care/services sub-component of MEDICAL HOME

Cumulative Cumulative acc100 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 918 3.67 918 3.67 12.5 127 0.51 1045 4.18 25.0 1475 5.90 2520 10.07 37.5 109 0.44 2629 10.51 50.0 457 1.83 3086 12.34 62.5 453 1.81 3539 14.15 75.0 1983 7.93 5522 22.08 87.5 680 2.72 6202 24.80 100.0 18811 75.20 25013 100.00 Frequency Missing = 77340

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APPENDIX C-1

**Access to Specialist Care & Services sub-component score (ACC_2)

Access to needed specialist care/services sub-component for

MEDICAL HOME composite measure Cumulative Cumulative acc_2 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 3539 14.15 3539 14.15 1 21474 85.85 25013 100.00 Frequency Missing = 77340

Coordinated Care Component **Interim variables Follow Up with Family sub-component

How often PDN follows up w/ family after specialist visit Cumulative Cumulative fu_spec Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 4349 20.54 4349 20.54 25 3646 17.22 7995 37.76 75 3526 16.65 11521 54.41 100 9652 45.59 21173 100.00 Frequency Missing = 81180 How often PDN follows up w/ family after special services/equip Cumulative Cumulative fu_serve Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 2247 24.82 2247 24.82 25 1857 20.51 4104 45.33 75 1306 14.43 5410 59.76 100 3643 40.24 9053 100.00


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APPENDIX C-1

Number of coor care follow up components Cumulative Cumulative coor_cnt Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 77722 75.94 77722 75.94 1 19036 18.60 96758 94.53 2 5595 5.47 102353 100.00 Total points on needed follow up care elements of MEDICAL HOME Cumulative Cumulative coor_sum Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 4969 20.17 4969 20.17 25 3698 15.01 8667 35.19 50 547 2.22 9214 37.41 75 3130 12.71 12344 50.12 100 9208 37.38 21552 87.50 125 369 1.50 21921 89.00 150 437 1.77 22358 90.77 175 486 1.97 22844 92.74 200 1787 7.26 24631 100.00 Frequency Missing = 77722

Average score on FOLLOW UP w/ FAMILY coor care sub-component of MEDICAL HOME

Cumulative Cumulative coor100 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 4969 20.17 4969 20.17 12.5 456 1.85 5425 22.03 25.0 3789 15.38 9214 37.41 37.5 155 0.63 9369 38.04 50.0 679 2.76 10048 40.79 62.5 369 1.50 10417 42.29 75.0 3412 13.85 13829 56.14 87.5 486 1.97 14315 58.12 100.0 10316 41.88 24631 100.00 Frequency Missing = 77722

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APPENDIX C-1

**Follow Up with Family sub-component score (COOR_2)

FOLLOW UP w/ FAMILY sub-component for MEDICAL HOME composite measure Cumulative Cumulative coor_2 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 10417 42.29 10417 42.29 1 14214 57.71 24631 100.00 Frequency Missing = 77722

Medical Home Composite Measure **Interim variables for Medical Home Composite Measure

Number of needed sub-components of Medical Home Cumulative Cumulative mh_cnt Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 14941 14.60 14941 14.60 1 32130 31.39 47071 45.99 2 30402 29.70 77473 75.69 3 7405 7.23 84878 82.93 4 17475 17.07 102353 100.00 Number needed Medical Home sub-components with score of 75pts or above Cumulative Cumulative mh_cnt2 Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 24383 23.82 24383 23.82 1 30895 30.18 55278 54.01 2 29831 29.15 85109 83.15 3 8878 8.67 93987 91.83 4 8366 8.17 102353 100.00

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APPENDIX C-1

- 202 -

Percent of needed MEDICAL HOME sub-components with score 75pts or above Cumulative Cumulative mh2_scor Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 9442 10.80 9442 10.80 25.0 720 0.82 10162 11.63 33.3 1262 1.44 11424 13.07 50.0 7115 8.14 18539 21.21 66.7 3038 3.48 21577 24.68 75.0 5970 6.83 27547 31.51 100.0 59865 68.49 87412 100.00 Frequency Missing = 14941 % meet MED HOME threshold of 75pt or above on EVERY needed sub-component - prev care visit NOT included Cumulative Cumulative mh_yn Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 0 42195 41.34 42195 41.34 1 59865 58.66 102060 100.00 Frequency Missing = 293

**Medical Home Composite Measure score (MH_COMP)

How many children/youth (ages 0-17) receive health care meeting the AAP definition of medical home? Cumulative Cumulative mh_comp Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ 1 49089 48.51 49089 48.51 2 52105 51.49 101194 100.00 Frequency Missing = 1159



APPENDIX C-1

2003 NATIONAL SURVEY OF CHILDREN’S HEALTH (NSCH)

Text and response options for questions used to assess Medical Home (Listed in the order asked in the survey)

QUESTIONS RESPONSE OPTIONS AND SKIP PATTERNS

SURVEY SECTION 4: HEALTH CARE ACCESS AND UTILIZATION

S4q03 During the past 12 months, how many times did (S.C.) see a doctor, nurse, or other health care professional for preventive medical care such as a physical exam or well-child check-up?

___ ___ ___ TIMES [RANGE CHECK: 000 – 995] (996) DON’T KN W O(997) REFUSED

SURVEY SECTION 5: MEDICAL HOME

S5q01 A personal doctor or nurse is a health professional who knows your child well and is familiar with your child’s health history. This can be a general doctor, a pediatrician, a specialist doctor, a nurse practitioner, or a physician’s assistant.

(0) NO [SKIP TO S5Q13] (1) YES (6) DON’T KNOW [SKIP TO S5Q13] (7) REFUSED [SKIP TO S5Q13]

Do you have one or more persons you think of as (S.C.)’s personal doctor or nurse?

The remaining questions are asked ONLY if the response to S5Q01 is "Yes".

S5q02 How often does (S.C.)'s personal doctor or nurse spend enough time with him/her?


S5q04 How often does (S.C.)'s personal doctor or nurse explain things in a way that you and (S.C.) can understand?


S5q06 During the past 12 months, have you needed to call (S.C.)'s personal doctor or nurse for help or advice over the phone? If Yes to S5q06:

S5q06a When you have called (S.C.)'s personal doctor or nurse for help or advice over the phone, how often were you able to get the help or advice you needed for him/her?



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APPENDIX C-1




S5q07 During the past 12 months, has (S.C.) needed care right away from his/her personal doctor or nurse for an illness or injury? If Yes to S5q07:

S5q07a When (S.C.) needed care right away for an illness or injury, how often did he/she get this care from his/her personal doctor or nurse as soon as you wanted?

(0) NO [SKIP TO S5Q08A] (1) YES (6) DON’T KNOW [SKIP TO S5Q08A] (7) REFUSED [SKIP TO S5Q08A]


S5q09 Specialists are doctors like surgeons, heart doctors, allergy doctors, psychiatrists, skin doctors, and others who specialize in one area of health care. During the past 12 months, did you or (S.C.)'s personal doctor or nurse think that he/she needed to see any specialist doctor or doctors? If Yes to S5q09:

S5q09a How much of a problem, if any, was it to get the care from the specialist doctor or doctors?

If Yes to S5q09:


(1) A big problem (2) A moderate problem (3) A small problem (4) No problem at all (6) DON’T KNOW (7) REFUSED

S5q09c How often did (S.C.)'s personal doctor or nurse talk with you about what happens during his/her visits to a specialist doctor or doctors?

(1) Never (2) Sometimes (3) Usually (4) Always (5) NO VISITS TO SPECIALIST DOCTOR (6) DON’T KNOW (7) REFUSED

S5q10 Children sometimes need other special types of services that they can’t get from their personal doctor or nurse. For example: children may need special services like physical therapy, medical equipment like wheel chairs, special education services or counseling. During the past 12 months, did (S.C.) need any type of special services, equipment, or other care for his/her health? If Yes to S5q10:

S5q10a How much of a problem, if any, did you have getting the special services, equipment, or other care he/she needed?



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APPENDIX C-1

- 208 -




If Yes to S5q10: S5q10c How often did (S.C.)'s personal doctor or nurse talk with you about the special care or equipment that (he/she) gets?

(1) Never (2) Sometimes (3) Usually (4) Always (5) NO SPECIAL CARE OR EQUIPMENT RECEIVED (6) DON’T KNOW (7) REFUSED

(Asked only for children living in households (HH) reporting a primary language other than English) S5q13 During the past 12 months, did you or (S.C.) need an interpreter to help speak with his or her doctors or nurses? If Yes to S5q13:

S5q13a When you or (S.C.) needed an interpreter, how often were you able to get someone other than a family member to help you speak with the doctors or nurses?




APPENDIX C_2: SPSS User Resources



Weighted Estimates for Medical Home composite measure, the six sub-component scores and associated interim

variables

2003 National Survey of Children’s Health (NSCH) Weighted estimates* for Medical Home composite measure, the six sub-component scores


2003 NSCH

% all children ages 0-17*

% CSHCN only ages 0-17* NOTES*




83.3

90.0

1) Asked for all children

ACCESSIBLE -- --



65.2

66.2 77.6

0.1

73.4

75.1 84.1

0.8

2) Family centered care questions are asked only for children with at least one personal doctor or nurse

CONTINUOUS -- --





a. No problems getting needed care from specialist doctor(s) b. No problems getting needed specialized health services or

equipment

77.8

40.1

23.2 32.6

19.2

15.1 5.7

86.5

55.3

36.8 46.9

42.7

33.0 18.1

3) Asked for all children 4) & 5) Asked only for children with at least one personal doctor or nurse AND need for the specific type of care being assessed




12.9 12.0

4.3

29.4 27.6

15.3

6) Asked only for children with at least one personal doctor or nurse AND a need for specialist care or specialized services/equip or both during the past 12 months



* All estimated percentages are weighted to represent the U.S. non-institutionalized child population ages 0-17 years † Questions assessing these concepts are combined under the Family Centered Care component for scoring purposes. -- Not assessed by the survey.

APPENDIX C-2

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SPSS scoring program variable names for the six sub-component scores and associated interim variables used to


Measuring Medical Home using Data Elements from the 2003 National Survey of Children’s Health (NSCH)

SPSS scoring program variable names for the six sub-component scores and associated interim variables used to derive the Medical Home composite measure

2003 NSCH

SPSS Variable names


MEDICAL HOME COMPOSITE MEASURE: MH_COMP [S5Q01; PDNCOM_2; PREVCARE_2; GETCARE_2; ACCESS_2; COOR_2]

ESTABLISHED RELATIONSHIP WITH A SPECIFIC PROVIDER 1) Child has at least one “personal doctor or nurse”

S5Q01 [S5Q01]

ACCESSIBLE --



PDNCOM_2 ADEQTIME EXPLAIN INTERPRET

[ADEQTIME; EXPLAIN; INTERPRET] S5q02 S5q04 S5q13; S5q13a

CONTINUOUS --





a. No problems getting needed care from specialist doctor(s) b. No problems getting needed specialized health services or equipment

PREVCARE_2 GETCARE_2 GETCARE PHONEHLP

ACCESS_2

SPECIALIST SERVICES

[S4Q03r]

[GETCARE; PHONEHLP]

S5q06; S5q06a S5q07; S5q07a

[SPECIALIST; SERVICES]

S5q09; S5q09a S5q10; S5q10a

COOR_2 COORDINATED [FU_SPECIALIST;

FU_SERVE] 6) Gets effective care coordination when needed


FU_SPECIALIST S5q09c


FU_SERVE S5q10c



† Questions assessing these concepts are combined under the Family Centered Care component for scoring purposes. -- Not assessed by the survey.

APPENDIX C-2

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APPENDIX C-2

MEDICAL HOME Composite Measure


S4Q01 and S4Q03; SA5Q01 – S5Q13a Survey Items Used



Description Percent of children/youth ages 0–17 who have a primary care provider (e.g. personal doctor or nurse) AND one or more preventive care visits during past 12 months AND consistently received all needed care from their primary care provider.


The medical home composite measure and its sub-components are designed to operationalize the American Academy of Pediatrics (AAP) definition of “medical home”. According to this definition, all children ideally should have access to “accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective care within a medical home.”

For additional information about the questions in the medical home section (Section 5) of the 2003 National Survey of Children’s Health, go to: www.cdc.gov/nchs/data/slaits/NSCH_Methodology_Report.pdf

SPSS Code and Annotations

***************************Personal doctor or nurse (PDN) Component *************************** ***Personal doctor or nurse sub-component of medical home composite measure *NOTE: Use all responses to S5q01, including 6=DK and 7=Refused MISSING VALUES S5Q01 (). *************************** Family Centered Care Component ********************************* *** COMMUNICATION with PDN sub-sub-component of MEDICAL HOME composite measure ****** Step 1: The following syntax sets up the interim variables needed to construct overall score for "Communication with PDN" sub-component of MEDICAL HOME composite measure RECODE S5Q02 S5Q04 (1 = 0) ( 2=25) (3=75) (4=100) (6=6) (7=7) INTO adeqtime explain . VARIABLE LABEL adeqtime "How often does ch's PDN spend enough time with them?". VARIABLE LABEL explain "How often does ch's PDN explain things so parent or ch understands?". VALUE LABEL adeqtime explain 0 'Never' 25 'Sometimes' 75 'Usually' 100 'Always' 6 'DK' 7 'Refused'. MISSING VALUES adeqtime explain (6,7). RECODE adeqtime explain (6=SYSMIS) (7=SYSMIS). EXECUTE .

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APPENDIX C-2

COMPUTE interpret = 99. IF (s5q01 = 1) and (s5q13a = 1) interpret = 0. IF (s5q01 = 1) and (s5q13a = 2) interpret = 25. IF (s5q01 = 1) and (s5q13a = 3) interpret = 75. IF (s5q01 = 1) and (s5q13a = 4) interpret = 100. IF (s5q01 = 1) and (s5q13a = 6) interpret = 6. VAR LABEL interpret 'How often able to get needed interpreter other than family member for grp with PDN'. VALUE LABEL interpret 0 'Never' 25 'Sometimes' 75 'Usually' 100 'Always' 6 'DK'. MISSING VALUES interpret (6). RECODE interpret (99=SYSMIS). EXECUTE . ****** Step 2: Construct "Communication with PDN" sub-component of MEDICAL HOME composite measure COUNT pdncomm_cnt = adeqtime explain interpret (0, 25, 75, 100). VAR LABEL pdncomm_cnt 'Number of PDN communication elements needed'. EXECUTE. COMPUTE pdn_sum = SUM (adeqtime, explain, interpret). VAR LABEL pdn_sum 'Total points across all needed elements of comm with PDN'. EXECUTE. DO IF (pdncomm_cnt>0). COMPUTE pdncom100 = (pdn_sum / pdncomm_cnt). END IF. VAR LABEL pdncom100 'Average score for communication with PDN sub-component of MEDICAL HOME' . EXECUTE. RECODE pdncom100 (0 thru 67=0) (75 thru Highest=1) INTO pdncom_2 . VAR LABEL pdncom_2 'PDN communication sub-component for Med Home composite measure'. VALUE LABEL pdncom_2 0 'Comm happens less than usually/always' 1 'Usually/always get needed communication'. EXECUTE . *************************************Comprehensive Care Component ************************************ ***ONE OR MORE PREVENTIVE medical care visits sub-component of MEDICAL HOME composite measure MISSING VALUES s4q01 (6, 7). MISSING VALUES s4q03r (96, 97). COMPUTE prevcare_2 = 0. IF (s4q01 = 0) or (s4q03r = 0) prevcare_2 = 1. IF (s4q03r >=1) prevcare_2 = 2. VAR LABELS prevcare_2 'At least 1 Preventive care visit during past 12 mos'. VAL LABELS prevcare_2 0 'Unknown' 1 'None in past 12 months' 2 'Had preventive care visit in past 12 months'. EXECUTE.

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APPENDIX C-2

***GETTING CARE / advice from ch's PDN sub-component of MEDICAL HOME composite measure (questions only asked for grp with PDN) ****** Step 1: The following syntax sets up the interim variables needed to construct overall score for "Getting needed care from PDN" sub-component of MEDICAL HOME composite measure RECODE S5Q06A S5Q07A (6=6) (7=7) (1 = 0) (2 = 25) (3 = 75) (4=100) (ELSE=SYSMIS) INTO phonehlp getcare . VAR LABELS phonehlp "How often able to get advice over phone from ch's PDN when needed". VAR LABELS getcare "How often able to get needed care right away from ch's PDN". VALUE LABELS phonehlp getcare 0 'Never' 25 'Sometimes' 75 'Usually' 100 'Always' 6 'DK' 7 'Refused'. RECODE phonehlp getcare (6=SYSMIS) (7=SYSMIS) (999 = SYSMIS). EXECUTE . ****** Step 2: Construct "Getting needed care from PDN" scoring sub-component of MEDICAL HOME composite measure COUNT getcare_cnt = phonehlp getcare (0, 25, 75, 100). VAR LABEL getcare_cnt 'Number of getting care elements needed'. EXECUTE. COMPUTE getcare_sum = SUM (phonehlp, getcare). VAR LABEL getcare_sum 'Total points across needed elements of getting phone or urgent care from PDN'. EXECUTE. DO IF (getcare_cnt>0). COMPUTE getcare100 = (getcare_sum / getcare_cnt). END IF. VAR LABEL getcare100 'Average score for needed care sub-component of MEDICAL HOME' . EXECUTE. RECODE getcare100 (0 thru 67=0) (75 thru Highest=1) INTO getcare_2 . VAR LABEL getcare_2 'Getting needed phone/urgent care from PDN sub-component for Med Home composite measure'. VALUE LABEL getcare_2 0 'Care or advice available less than usually/always' 1 'Usually/always get needed care or advice'. EXECUTE . ***ACCESS TO NEEDED SPECIALIST & SERVICES sub-component of MEDICAL HOME composite measure (questions only asked for grp with PDN) ****** Step 1: The following syntax sets up the interim variables needed to construct overall score for "ACCESS to NEEDED SPECIALIST & SERVICES " sub-component of MEDICAL HOME composite measure RECODE S5Q09A S5Q10A (6=6) (7=7) (1 = 0) (2 = 25) (3 = 75) (4=100) (ELSE=SYSMIS) INTO specialist services . VAR LABEL specialist "Problems getting needed care from specialist dr". VAR LABEL services "Problems getting needed services or equip". VALUE LABEL specialist services 0 'Big problem' 25 'Moderate problem' 75 'Small problem' 100 'No problem' 6 'DK' 7 'Refused'.

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APPENDIX C-2

RECODE specialist services (99=SYSMIS) (6=SYSMIS) (7 = SYSMIS). EXECUTE . ****** Step 2: Construct "ACCESS to NEEDED SPECIALIST & SERVICES " sub-component of MEDICAL HOME composite measure COUNT access_cnt = specialist services (0, 25, 75, 100). VAR LABEL access_cnt 'Number of access to care elements needed'. EXECUTE. COMPUTE access_sum = SUM (specialist, services). VAR LABEL access_sum 'Total points across accessing needed specialist care or services elements of MEDICAL HOME' . EXECUTE. DO IF (access_cnt>0). COMPUTE access100 = (access_sum / access_cnt). END IF. VAR LABEL access100 'Average score for access to needed specialist care/services sub-component of MEDICAL HOME' . EXECUTE. RECODE access100 (0 thru 67=0) (75 thru Highest=1) INTO access_2 . VAR LABEL access_2 'Access to needed specialist care/services sub-component for Med Home composite measure'. VALUE LABEL access_2 0 'Significant problems accessing care' 1 'Few or no problems accessing care'. EXECUTE . ***********************************Coordinated Care Component **************************************** *** FOLLOW UP w/ FAMILY sub-component of MEDICAL HOME composite measure (questions only asked for group with PDN and needing specialist and/or specialized services) ****** Step 1: The following syntax sets up the interim variables needed to construct overall score for "FOLLOW UP w/ FAMILY " sub-component of MEDICAL HOME composite measure RECODE S5Q09C S5Q10C (1=0) (2=25) (3=75) (4=100) (ELSE = SYSMIS) INTO fu_specialist fu_serve . VAR LABEL fu_specialist 'How often PDN follows up w/ family after specialist visit'. VAR LABEL fu_serve 'How often PDN follows up w/ family after special services/equip'. VALUE LABEL fu_specialist fu_serve 0 'Never' 25 'Sometimes' 75 'Usually' 100 'Always'. EXECUTE . ****** Step 2: Construct "FOLLOW UP w/ FAMILY" sub-component of MEDICAL HOME composite measure COUNT coor_cnt = fu_specialist fu_serve (0, 25, 75, 100). VAR LABEL coor_cnt 'Number of coor care follow up elements needed'. EXECUTE.

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APPENDIX C-2

COMPUTE coor_sum = SUM (fu_specialist, fu_serve). VAR LABEL coor_sum 'Total points on needed follow up care elements of MEDICAL HOME' . EXECUTE. DO IF (coor_cnt>0). COMPUTE coor100 = (coor_sum / coor_cnt). END IF. VAR LABEL coor100 'Average score on follow up care from PDN coor care sub-component of MEDICAL HOME' . EXE. RECODE coor100 (0 thru 67=0) (75 thru Highest=1) INTO coor_2 . VAR LABEL coor_2 'Coor care sub-component for Med Home composite measure'. VALUE LABEL coor_2 0 'PDN follows up less than usually/always' 1 'PDN usually/always follows up'. EXECUTE . ******************************** MEDICAL HOME COMPOSITE MEASURE****************************************** ***The following code uses the 5 sub-components created above to derive the MEDICAL HOME composite measure using score of 75 pts or above on EVERY needed sub-component scoring approach ******Step 1: Construct medical home composite measure without the preventive care visit criterion COUNT mh_cnt = pdncom_2 getcare_2 access_2 coor_2 (0,1). VAR LABEL mh_cnt 'Number of sub-components of Medical Home needed'. EXECUTE. COUNT mh_cnt2 = pdncom_2 getcare_2 access_2 coor_2 (1). VAR LABEL mh_cnt2 'Number needed Medical Home sub-components with score of 75pt or above'. EXECUTE. DO IF (mh_cnt>0). COMPUTE mh2_score = (mh_cnt2 / mh_cnt) * 100. END IF. VAR LABEL mh2_score '% of needed MEDICAL HOME sub-components with score 75pt or above' . EXECUTE. COMPUTE mh_yn = 0. IF ((SYSMIS (mh2_score)) and ((s5q01 = 6) or (s5q01 = 7))) mh_yn = 999. IF (mh2_score = 100) mh_yn = 1. IF (mh2_score < 100) mh_yn = 0. VAR LABEL mh_yn "% meet MED HOME threshold of 75pts or above on EVERY needed sub-component - prev care visit not included" . VALUE LABEL mh_yn 0 "No PDN or PDN & less than 75pts on 1 or more needed sub-components" 1 "PDN & 75 pts or above on EVERY needed sub-component" 999 "DK or Refused to PDN" . EXECUTE. RECODE mh_yn (999 = SYSMIS). EXECUTE.

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APPENDIX C-2

- 225 -

******Step 2: Construct MEDICAL HOME composite measure with at least one preventive care visit during last 12 mos criterion added COMPUTE MH_comp = 999. IF ((mh_yn= 0) and (prevcare_2 >= 1)) MH_comp = 0. IF ((mh_yn= 1) and (prevcare_2 = 1)) MH_comp = 0. IF ((mh_yn= 1) and (prevcare_2 = 2)) MH_comp = 1. VAR LABEL MH_comp "How many children/youth (ages 0-17) receive health care that meets the AAP definition of medical home?". VALUE LABEL MH_comp 0 'Care DOES NOT meet medical home definition' 1 'Care MEETS medical home definition'. RECODE MH_comp (999 = SYSMIS). EXECUTE.

APPENDIX C-2



and composite measure generated by the SPSS scoring program

226

APPENDIX C-2

Personal Doctor or Nurse (PDN) Component **PDN sub-component score (S5Q01)

S5Q01 Do you have one or more persons you think of as [S.C.]'spersonal doctor or nurse?

14568 14.2 14.2 14.287491 85.5 85.5 99.7

267 .3 .3 100.026 .0 .0 100.0

102352 100.0 100.01 .0

102353 100.0

0 No1 Yes6 Don't Know7 RefusedTotal

Valid

SystemMissingTotal


Percent

Family Centered Care Component **Interim variables for Communication with PDN sub-component

adeqtime How often does ch's PDN spend enough time with them?

2006 2.0 2.3 2.313379 13.1 15.4 17.717414 17.0 20.0 37.754117 52.9 62.3 100.086916 84.9 100.015437 15.1

102353 100.0

0 Never25 Sometimes75 Usually100 AlwaysTotal

Valid

SystemMissingTotal


Percent

- 228 -

APPENDIX C-2

explain How often does ch's PDN explain things so parent or chunderstands?

756 .7 .9 .93644 3.6 4.2 5.0

12003 11.7 13.8 18.870790 69.2 81.2 100.087193 85.2 100.015160 14.8

102353 100.0


Valid

SystemMissingTotal


Percent

interpret How often able to get needed interpreter other than familymember for grp with PDN

138 .1 12.3 12.3335 .3 29.9 42.3

99 .1 8.8 51.1547 .5 48.9 100.0

1119 1.1 100.08 .0

101226 98.9101234 98.9102353 100.0


Valid

6 DKSystemTotal

Missing

Total


Percent

pdncomm_cnt Number of needed PDN communicationcomponents

14966 14.6 14.6 14.6643 .6 .6 15.3

85647 83.7 83.7 98.91097 1.1 1.1 100.0

102353 100.0 100.0

0123Total


CumulativePercent

- 229 -

APPENDIX C-2

pdn_sum Total points across all needed elements of comm withPDN

333 .3 .4 .4711 .7 .8 1.2

1983 1.9 2.3 3.5545 .5 .6 4.1

5070 5.0 5.8 9.98341 8.1 9.5 19.45286 5.2 6.0 25.5

14730 14.4 16.9 42.349820 48.7 57.0 99.4

203 .2 .2 99.634 .0 .0 99.6

100 .1 .1 99.7231 .2 .3 100.0

87387 85.4 100.014966 14.6

102353 100.0

0255075100125150175200225250275300Total

Valid

SystemMissingTotal


Percent

pdncom100 Average score for communication with PDNcomponent of MEDICAL HOME

333 .3 .4 .410 .0 .0 .4

622 .6 .7 1.134 .0 .0 1.1

2087 2.0 2.4 3.522 .0 .0 3.6

367 .4 .4 4.093 .1 .1 4.1

4759 4.6 5.4 9.542 .0 .0 9.6

8248 8.1 9.4 19.0143 .1 .2 19.2

5486 5.4 6.3 25.534 .0 .0 25.5

14688 14.4 16.8 42.3100 .1 .1 42.4

50319 49.2 57.6 100.087387 85.4 100.014966 14.6

102353 100.0

081317253338425058636775838892100Total

Valid

SystemMissingTotal


Percent

- 230 -

APPENDIX C-2

**Communication with PDN sub-component score (PDNCOM_2)

pdncom_2 PDN communication component for Med Home index

16760 16.4 19.2 19.2

70627 69.0 80.8 100.0

87387 85.4 100.014966 14.6

102353 100.0

0 Comm happens lessthan usually/always1 Usually/always getneeded communicationTotal

Valid

SystemMissingTotal


Percent

Comprehensive Care Component ** Preventive Medical Care Visit sub-component score (PREVCARE_2)

prevcare_2 At least 1 Preventive care visit during past 12 mos

908 .9 .9 .922255 21.7 21.7 22.6

79190 77.4 77.4 100.0

102353 100.0 100.0

0 Unknown1 None in past 12 months2 Had preventive carevisit in past 12 monthsTotal


CumulativePercent

**Interim variables Getting Needed Care sub-component

phonehlp How often able to get advice over phone from ch's PDN whenneeded

362 .4 .9 .91682 1.6 4.3 5.35416 5.3 14.0 19.3

31221 30.5 80.7 100.038681 37.8 100.063672 62.2

102353 100.0


Valid

SystemMissingTotal


Percent

- 231 -

APPENDIX C-2

getcare How often able to get needed care right away from ch's PDN

553 .5 2.0 2.01572 1.5 5.8 7.85120 5.0 18.7 26.5

20074 19.6 73.5 100.027319 26.7 100.075034 73.3

102353 100.0


Valid

SystemMissingTotal


Percent

getcare_cnt Number of getting needed care sub-components

54335 53.1 53.1 53.130036 29.3 29.3 82.417982 17.6 17.6 100.0

102353 100.0 100.0

012Total


CumulativePercent

getcare_sum Total points across needed elements of gettingphone or urgent care from PDN

472 .5 1.0 1.01566 1.5 3.3 4.2

292 .3 .6 4.94693 4.6 9.8 14.6

24205 23.6 50.4 65.0647 .6 1.3 66.4

1091 1.1 2.3 68.73204 3.1 6.7 75.3

11848 11.6 24.7 100.048018 46.9 100.054335 53.1

102353 100.0

0255075100125150175200Total

Valid

SystemMissingTotal


Percent

- 232 -

APPENDIX C-2

getcare100 Average score for needed care sub-component ofMEDICAL HOME

472 .5 1.0 1.0132 .1 .3 1.3

1726 1.7 3.6 4.992 .1 .2 5.0

609 .6 1.3 6.3647 .6 1.3 7.7

5692 5.6 11.9 19.53204 3.1 6.7 26.2

35444 34.6 73.8 100.048018 46.9 100.054335 53.1

102353 100.0

013253850637588100Total

Valid

SystemMissingTotal


Percent

**Getting Needed Care sub-component score (GETCARE_2)

getcare_2 Getting needed phone/urgent care from PDN sub-component for MedHome composite measure

3678 3.6 7.7 7.7

44340 43.3 92.3 100.0

48018 46.9 100.054335 53.1

102353 100.0

0 Care or adviceavailable less thanusually/always1 Usually/always getneeded care or adviceTotal

Valid

SystemMissingTotal


Percent

- 233 -

APPENDIX C-2

**Interim variables Access to Specialist Care & Services sub-component

specialist Problems getting needed care from specialist dr

966 .9 4.5 4.51593 1.6 7.4 11.92118 2.1 9.8 21.7

16870 16.5 78.3 100.021547 21.1 100.080806 78.9

102353 100.0

0 Big problem25 Moderate problem75 Small problem100 No problemTotal

Valid

SystemMissingTotal


Percent

services Problems getting needed services or equip

638 .6 7.0 7.0782 .8 8.5 15.5

1036 1.0 11.3 26.86705 6.6 73.2 100.09161 9.0 100.0

93192 91.0102353 100.0

0 Big problem25 Moderate problem75 Small problem100 No problemTotal

Valid

SystemMissingTotal


Percent

access_cnt Number of needed access to care elements

77340 75.6 75.6 75.619318 18.9 18.9 94.45695 5.6 5.6 100.0

102353 100.0 100.0

012Total


CumulativePercent

- 234 -

APPENDIX C-2

access_sum Total points across accessing needed specialistcare or services elements of MEDICAL HOME

918 .9 3.7 3.71456 1.4 5.8 9.5

146 .1 .6 10.11884 1.8 7.5 17.6

15920 15.6 63.6 81.3453 .4 1.8 83.1208 .2 .8 83.9680 .7 2.7 86.6

3348 3.3 13.4 100.025013 24.4 100.077340 75.6

102353 100.0

0255075100125150175200Total

Valid

SystemMissingTotal


Percent

access100 Average score for access to needed specialistcare/services sub-component of MEDICAL HOME

918 .9 3.7 3.7127 .1 .5 4.2

1475 1.4 5.9 10.1109 .1 .4 10.5457 .4 1.8 12.3453 .4 1.8 14.1

1983 1.9 7.9 22.1680 .7 2.7 24.8

18811 18.4 75.2 100.025013 24.4 100.077340 75.6

102353 100.0

013253850637588100Total

Valid

SystemMissingTotal


Percent

- 235 -

APPENDIX C-2

**Access to Specialist Care & Services sub-component score (ACCESS_2)

access_2 Access to needed specialist care/services sub-component for MedHome composite measure

3539 3.5 14.1 14.1

21474 21.0 85.9 100.0

25013 24.4 100.077340 75.6

102353 100.0

0 Significant problemsaccessing care1 Few or no problemsaccessing careTotal

Valid

SystemMissingTotal


Percent

Coordinated Care Component **Interim variables Follow Up with Family sub-component

fu_specialist How often PDN follows up w/ family after specialist visit

4349 4.2 20.5 20.53646 3.6 17.2 37.83526 3.4 16.7 54.49652 9.4 45.6 100.0

21173 20.7 100.081180 79.3

102353 100.0


Valid

SystemMissingTotal


Percent

fu_serve How often PDN follows up w/ family after special services/equip

2247 2.2 24.8 24.81857 1.8 20.5 45.31306 1.3 14.4 59.83643 3.6 40.2 100.09053 8.8 100.0

93300 91.2102353 100.0


Valid

SystemMissingTotal


Percent

- 236 -

APPENDIX C-2

coor_cnt Number of coor care follow up elements needed

77722 75.9 75.9 75.919036 18.6 18.6 94.55595 5.5 5.5 100.0

102353 100.0 100.0

012Total


CumulativePercent

coor_sum Total points on needed follow up care elements ofMEDICAL HOME

4969 4.9 20.2 20.23698 3.6 15.0 35.2547 .5 2.2 37.4

3130 3.1 12.7 50.19208 9.0 37.4 87.5369 .4 1.5 89.0437 .4 1.8 90.8486 .5 2.0 92.7

1787 1.7 7.3 100.024631 24.1 100.077722 75.9

102353 100.0

0255075100125150175200Total

Valid

SystemMissingTotal


Percent

coor100 Average score on follow up care from PDN coor caresub-component of MEDICAL HOME

4969 4.9 20.2 20.2456 .4 1.9 22.0

3789 3.7 15.4 37.4155 .2 .6 38.0679 .7 2.8 40.8369 .4 1.5 42.3

3412 3.3 13.9 56.1486 .5 2.0 58.1

10316 10.1 41.9 100.024631 24.1 100.077722 75.9

102353 100.0

013253850637588100Total

Valid

SystemMissingTotal


Percent

- 237 -

APPENDIX C-2

**Follow Up with Family sub-component score (COOR_2)

coor_2 Coor care sub-component for Med Home composite measure

10417 10.2 42.3 42.3

14214 13.9 57.7 100.0

24631 24.1 100.077722 75.9

102353 100.0

0 PDN follows up lessthan usually/always1 PDN usually/alwaysfollows upTotal

Valid

SystemMissingTotal


Percent

Medical Home Composite Measure **Interim variables for Medical Home Composite Measure

mh_cnt Number of sub-components of Medical Home needed

14941 14.6 14.6 14.632130 31.4 31.4 46.030402 29.7 29.7 75.7

7405 7.2 7.2 82.917475 17.1 17.1 100.0

102353 100.0 100.0

01234Total


CumulativePercent

mh_cnt2 Number needed Medical Home sub-components withscore of 75pt or above

24383 23.8 23.8 23.830895 30.2 30.2 54.029831 29.1 29.1 83.2

8878 8.7 8.7 91.88366 8.2 8.2 100.0

102353 100.0 100.0

01234Total


CumulativePercent

- 238 -

APPENDIX C-2

- 239 -

mh2_score % of needed MEDICAL HOME sub-components withscore 75pt or above

9442 9.2 10.8 10.8720 .7 .8 11.6

1262 1.2 1.4 13.17115 7.0 8.1 21.23038 3.0 3.5 24.75970 5.8 6.8 31.5

59865 58.5 68.5 100.087412 85.4 100.014941 14.6

102353 100.0

02533506775100Total

Valid

SystemMissingTotal


Percent

mh_yn % meet MED HOME threshold of 75pts or above on EVERY neededsub-components - prev care not included

42195 41.2 41.3 41.3

59865 58.5 58.7 100.0

102060 99.7 100.0293 .3

102353 100.0

0 No PDN or PDN & lessthan 75pts on 1 or moreneeded sub-components1 PDN & 75 pts or aboveon EVERY neededsub-componentTotal

Valid

SystemMissingTotal


Percent

**Medical Home Composite Measure score (MH_COMP)

medhome_comp How many children/youth (ages 0-17) receive health care thatmeets the AAP definition of medical home?

52105 50.9 51.5 51.5

49089 48.0 48.5 100.0

101194 98.9 100.01159 1.1

102353 100.0

0 Care DOES NOT meetmedical home definition1 Care MEETS medicalhome definitionTotal

Valid

SystemMissingTotal


Percent

APPENDIX C-2



240

APPENDIX C-2




SURVEY SECTION 4: HEALTH CARE ACCESS AND UTILIZATION

S4q03 During the past 12 months, how many times did (S.C.) see a doctor, nurse, or other health care professional for preventive medical care such as a physical exam or well-child check-up?

___ ___ ___ TIMES [RANGE CHECK: 000 – 995] (996) DON’T KN W O(997) REFUSED

SURVEY SECTION 5: MEDICAL HOME

S5q01 A personal doctor or nurse is a health professional who knows your child well and is familiar with your child’s health history. This can be a general doctor, a pediatrician, a specialist doctor, a nurse practitioner, or a physician’s assistant.

Do you have one or more persons you think of as (S.C.)’s personal doctor or nurse?


The remaining questions are asked ONLY if the response to S5Q01 is "Yes".

S5q02 How often does (S.C.)'s personal doctor or nurse spend enough time with him/her?


S5q04 How often does (S.C.)'s personal doctor or nurse explain things in a way that you and (S.C.) can understand?


S5q06 During the past 12 months, have you needed to call (S.C.)'s personal doctor or nurse for help or advice over the phone? If Yes to S5q06:

S5q06a When you have called (S.C.)'s personal doctor or nurse for help or advice over the phone, how often were you able to get the help or advice you needed for him/her?


(1) Never (2) Sometimes (3) Usually (4) Always (6) DON’T KNOW (7) REFUSE

- 242 -

APPENDIX C-2




S5q07 During the past 12 months, has (S.C.) needed care right away from his/her personal doctor or nurse for an illness or injury? If Yes to S5q07:

S5q07a When (S.C.) needed care right away for an illness or injury, how often did he/she get this care from his/her personal doctor or nurse as soon as you wanted?

(0) NO [SKIP TO S5Q08A] (1) YES (6) DON’T KNOW [SKIP TO S5Q08A] (7) REFUSED [SKIP TO S5Q08A]


S5q09 Specialists are doctors like surgeons, heart doctors, allergy doctors, psychiatrists, skin doctors, and others who specialize in one area of health care. During the past 12 months, did you or (S.C.)'s personal doctor or nurse think that he/she needed to see any specialist doctor or doctors? If Yes to S5q09:

S5q09a How much of a problem, if any, was it to get the care from the specialist doctor or doctors?

If Yes to S5q09:



S5q09c How often did (S.C.)'s personal doctor or nurse talk with you about what happens during his/her visits to a specialist doctor or doctors?

(1) Never (2) Sometimes (3) Usually (4) Always (5) NO VISITS TO SPECIALIST DOCTOR (6) DON’T KNOW (7) REFUSED

- 243 -

APPENDIX C-2

- 244 -




S5q10 Children sometimes need other special types of services that they can’t get from their personal doctor or nurse. For example: children may need special services like physical therapy, medical equipment like wheel chairs, special education services or counseling. During the past 12 months, did (S.C.) need any type of special services, equipment, or other care for his/her health? If Yes to S5q10:

S5q10a How much of a problem, if any, did you have getting the special services, equipment, or other care he/she needed?



If Yes to S5q10: S5q10c How often did (S.C.)'s personal doctor or nurse talk with you about the special care or equipment that (he/she) gets?

(1) Never (2) Sometimes (3) Usually (4) Always (5) NO SPECIAL CARE OR EQUIPMENT RECEIVED (6) DON’T KNOW (7) REFUSED

(Asked only for children living in households (HH) reporting a primary language other than English) S5q13 During the past 12 months, did you or (S.C.) need an interpreter to help speak with his or her doctors or nurses? If Yes to S5q13:

S5q13a When you or (S.C.) needed an interpreter, how often were you able to get someone other than a family member to help you speak with the doctors or nurses?



245

2007 National Survey of Children’s Health

APPENDIX D_1: SPSS User Resources


247

2007 National Survey of Children’s Health (NSCH) Weighted estimates* for Medical Home composite measure, the five sub-component scores


2007 NSCH

% All children ages 0-17*

% CSHCN only ages 0-17*



92.2

94.7

ACCESSIBLE -- --


a. Usually or always spend enough time with child and parent b. Usually or always listen carefully to child and parent c. Usually or always sensitive to family’s values and customs d. Usually or always provide needed information e Usually or always make family feel like a partner in child’s care AND f. IF needed, interpreter services are usually or always available

65.1

76.7 86.5 86.3 82.1 84.8

2.7

64.8

79.0 87.0 87.8 81.8 84.8

1.9

CONTINUOUS -- --

COMPREHENSIVE 3) IF needed, no problems obtaining needed referrals

(Needed a referral to see other doctors or get services, past 12 months)

4) Has usual sources of care

13.1 (15.9)

93.1

25.2 (32.2)

94.8

COORDINATED 5) Gets all needed aspects of care coordination (Needed 1 or more of the three aspects of care coordination below)

a. IF needed, gets help with help with care coordination b. IF needed, very satisfied with communication btw doctors c. IF needed, very satisfied with how doctors communicate with school or other programs the child attends

28.3 (41.2)

15.1 19.0 7.1

43.4 (73.1)

22.1 39.4 16.9



* All estimated percentages are weighted to represent the U.S. non-institutionalized population of children ages 0-17 years † Questions assessing these concepts are combined under the Family Centered Care component for scoring purposes. -- Not assessed by the survey.

249


SPSS scoring program variable names for the six sub-component scores and associated interim variables used to


251

Measuring Medical Home using Data Elements from the

2007 National Survey of Children’s Health (NSCH) SPSS scoring program variable names for the five sub-component scores and


2007 NSCH

SPSS Variable names





PDN

K4Q04

ACCESSIBLE -- --



FAMCENT

TIME LISTEN SENSITIV INFO PARTNER INTERPRET

[TIME; LISTEN;SENSITIV; INFO; PARTNER; INTERPRET]

K5q40 K5q41 K5q42 K5q43 K5q44 K5q45; K5q46

CONTINUOUS -- --


4) Usual source(s) of care

NOREFPRB

USUAL

K5Q10, K5Q11

K4q01; K4q02r



CARECOOR

CAREHLP DRCOMM OTHERCOMM

[CAREHLP; DRCOMM; OTHCOMM] K5q20r, K5q21r; K5q22 K5q30 K5q31; K5q32



-- Not assessed by the survey. † Questions assessing these concepts are combined under the Family Centered Care component for scoring purposes.

Appendix D_1 Revised November 2010



2007 NSCH MEDICAL HOME Composite Measure


receive coordinated, ongoing, comprehensive care within a medical home

Survey Items Used K4Q04 K5Q40 K5Q41 K5Q42 K5Q43 K5Q44 K5Q46 K5Q11 K5Q10 K4Q01 K4Q02R K4Q22 K4Q24 K5Q30 K5Q31 K5Q32 K4Q20 K4Q21 K4Q25 K5Q20 K5Q21 K5Q22



Description Percent of children ages 0–17 who have a primary care provider (e.g. personal doctor or nurse) AND usual sources of care AND consistently get family-centered care from their doctors and other health care providers AND, if needed, receive effective care coordination AND, if needed, no problems getting referrals



The final medical home composite score used to measure this outcome is derived from the five sub-components constructed below.


***********MEDICAL HOME COMPOSITE MEASURE***2007 NSCH****** ************************************************************************************ *** Sub-component #1 ********************************************************* *** PERSONAL DOCTOR OR NURSE *************************************** *** MEETS sub-component #1 criteria if: pdn=1 ***************************** COMPUTE pdn = 99. IF (K4Q04 = 1) pdn = 1. IF (K4Q04 = 2) pdn = 1. IF (K4Q04 = 3) pdn = 0. EXECUTE. VARIABLE LABELS pdn "Personal Doctor or Nurse sub-component of MEDICAL HOME composite measure". VALUE LABELS pdn 0 "No, does not have PDN" 1 "YES, has at least one PDN". FORMATS pdn (f4.0). RECODE pdn (99=SYSMIS). EXECUTE.

*** Sub-component #2 ********************************************************** *** FAMILY-CENTERED CARE ************************************************ *** MEETS sub-component #2 criteria if: (famcent=1 or famcent=2) ******* *STEP 1 – Construct 7 interim variables used to score Family-Centered Care measure COMPUTE time = 99. IF (K5Q40 = 1 or K5Q40 = 2) time = 0. IF (K5Q40 = 3 or K5Q40 = 4) time = 1. IF (sysmis (K5Q40)) time = 2. EXECUTE. VARIABLE LABELS time "Doctor spends enough time, past 12 months". COMPUTE listen = 99. IF (K5Q41 = 1 or K5Q41 = 2) listen = 0. IF (K5Q41 = 3 or K5Q41 = 4) listen = 1. IF (sysmis (K5Q41)) listen = 2. EXECUTE. VARIABLE LABELS listen "Doctor listens carefully, past 12 months". COMPUTE sensitiv = 99. IF (K5Q42 = 1 or K5Q42 = 2) sensitiv = 0. IF (K5Q42 = 3 or K5Q42 = 4) sensitiv = 1. IF (sysmis (K5Q42)) sensitiv = 2. EXECUTE. VARIABLE LABELS sensitiv "Doctor is sensitive to family values and customs". COMPUTE info = 99. IF (K5Q43 = 1 or K5Q43 = 2) info = 0. IF (K5Q43 = 3 or K5Q43 = 4) info = 1. IF (sysmis (K5Q43)) info = 2. EXECUTE. VARIABLE LABELS info "Doctor provides needed information, past 12 months". COMPUTE partner = 99. IF (K5Q44 = 1 or K5Q44 = 2) partner = 0. IF (K5Q44 = 3 or K5Q44 = 4) partner = 1. IF (sysmis (K5Q44)) partner = 2. EXECUTE. VARIABLE LABELS partner "Doctor makes parent feel like partner in child's care, past 12 months". VALUE LABELS time listen sensitiv info partner 0 "Sometimes/Never" 1 "Usually/Always" 2 "No qualifying services". RECODE K5Q46 (SYSMIS = 999). COMPUTE interpret = 99. IF (K5Q46 = 1 or K5Q46 = 2) interpret = 0. IF (K5Q46 = 3 or K5Q46 = 4) interpret = 1. IF (K5Q46 = 999) interpret = 2. EXECUTE. VARIABLE LABELS interpret "Interpreter provided when needed (primary household language not English)". VALUE LABELS interpret

0 "Sometimes/Never" 1 "Usually/Always" 2 "Interpreter not needed". *STEP 2 - Family-Centered Care MISSING VALUES time listen sensitiv info partner interpret (). COMPUTE famcent = 99. IF (time = 0) or (listen = 0) or (sensitiv = 0) or (info = 0) or (partner = 0) or (interpret = 0) famcent = 0. IF (time = 1 or time = 2) and (listen = 1 or listen = 2) and (sensitiv = 1 or sensitiv = 2) and (info = 1 or info = 2) and (partner = 1 or partner = 2) and ((interpret = 1) or (interpret = 1 or interpret = 2)) famcent = 1. IF (time = 2) and (listen = 2) and (sensitiv = 2) and (info = 2) and (partner = 2) famcent = 2. IF (time = 99 or listen = 99 or sensitiv = 99 or info = 99 or partner = 99 or interpret = 99) famcent= 99. EXECUTE. VARIABLE LABELS famcent "Family-Centered Care sub-component of MEDICAL HOME measure". VALUE LABELS famcent 0 "No, does not have FCC" 1 "YES, has Family-Centered Care" 2 "No qualifying services, past 12 months". FORMATS famcent (f4.0). RECODE famcent (99=SYSMIS). ****************************Comprehensive Care ************************************ *** Sub-component #3 **************************************************************** *** GETTING NEEDED REFERRALS *********************************************** *** MEETS sub-component #3 criteria if: (norefprb=1 or norefprb=2) ************* RECODE K5Q11 (SYSMIS=999). EXECUTE. COMPUTE norefprb = 99. IF (K5Q11 = 1) or (K5Q11 = 2) norefprb = 0. IF (K5Q11 = 3) norefprb = 1. IF (K5Q10 = 0) norefprb = 2. EXECUTE . VARIABLE LABELS norefprb "Getting Needed Referrals sub-component of MEDICAL HOME measure". VALUE LABELS norefprb 0 "Big or small problem getting needed referral" 1 "No problem getting needed referral" 2 "Referral not needed". FORMATS norefprb (f4.0). RECODE norefprb (99=SYSMIS). *** Sub-component #4 **************************************************************** *** USUAL SOURCES OF CARE *************************************************** *** MEETS sub-component #4 criteria if: usual=1 ********************************** COMPUTE usual = 99. IF (K4Q01 = 1 or K4Q01 = 3) and (K4Q02R = 1 or K4Q02R = 3 or K4Q02R = 4 or K4Q02R = 5 or K4Q02R = 6 or K4Q02R = 8 or K4Q02R = 10) usual = 1. IF (K4Q01 = 2) or (K4Q02R = 2) or (K4Q02R = 7) or (K4Q02R = 9) usual = 0. IF (K4Q01 >= 6) or (K4Q02R = 996 or K4Q02R = 997) usual = 99. EXECUTE.

VARIABLE LABELS usual "Usual Sources of Care sub-component of MEDICAL HOME measure". VALUE LABELS usual 0 "No usual source of care" 1 "YES, has usual source of care ". FORMATS usual (f4.0). RECODE usual (99=SYSMISS). *******************************Coordinated Care ************************************** *** Sub-component #5 **************************************************************** *** EFFECTIVE CARE COORDINATION ******************************************* *** MEETS sub-component #5 criteria if: (carecoor=1 or carecoor=2) ************ *STEP 1 – Construct 3 interim variables used to score Effective Care Coordination * #1 Communication among health providers – two parts: NEED and SATISFACTION * NEED for communication among health providers RECODE K4Q22 (1=1) (0=0) (SYSMISS=999) (6=99) (7=99) INTO K4Q22r. EXECUTE. VARIABLE LABELS K4Q22r "Received counseling or treatment from mental health professional, last 12 months, age 2-17". VALUE LABELS K4Q22r 0 "No" 1 "Yes" 99 "DK/REF" 999 "Under 2 yrs or missing". FORMATS K4Q22r (f4.0). COMPUTE need_drcomm = 999. IF (K4Q22r = 0) or (K4Q24 = 0) need_drcomm = 0. IF (K4Q22r = 1) or (K4Q24 = 1) need_drcomm = 1. IF (K4Q22r = 999) and (K4Q24 = 0) need_drcomm = 0. IF (K4Q22r = 999) and (K4Q24 = 1) need_drcomm = 1. IF (K4Q22r = 99) and (K4Q24 = 6 or K4Q24 = 7) need_drcomm = 99. EXECUTE. VARIABLE LABELS need_drcomm "Received mental health and/or specialist care during past 12 months (drcomm denominator)". VALUE LABELS need_drcomm 0 "No, did not receive either" 1 "Yes, received one or both" 99 "DK/Ref to both" 999 "SYSMISS to both". FORMATS need_drcomm (f4.0). * SATISFACTION with communication between 2 or more health providers RECODE K5Q30 (1=1) (2=2) (3=3) (4=4) (5=5) (SYSMIS=999) (6=99) (7=99) into K5Q30r. EXECUTE. VARIABLE LABELS K5Q30r "Satisfaction with communication among doctors, received two or more service types in past 12 months". VALUE LABELS K5Q30r 1 "Very satisfied" 2 "Somewhat satisfied"

3 "Somewhat dissatisfied" 4 "Very dissatisfied" 5 "Not needed or not wanted" 99 "DK/REF" 999 "Less than 2 service types". FORMATS K5Q30r (f4.0). COMPUTE drcomm = 99. IF (K5Q30r = 1) and (need_drcomm = 1) drcomm = 1. IF (K5Q30r = 2 or K5Q30r = 3 or K5Q30r = 4) and (need_drcomm = 1) drcomm = 0. IF (K5Q30r = 5) and (need_drcomm = 1) drcomm = 2. IF (need_drcomm = 0) drcomm = 2. IF (K5Q30r = 999) and (need_drcomm = 1) drcomm = 2. EXECUTE. VARIABLE LABELS drcomm "Very satisfied with communication among doctors". VALUE LABELS drcomm 0 "No, less than very satisfied” 1 "YES, very satisfied" 2 "Not needed" 99 "DK/Ref/missing to any". FORMATS drcomm (f4.0). * #2 Communication between doctor and school or other services – 2 parts: NEED and SATISFACTION * NEED for communication between doctor and school or other services RECODE K5Q31 (1=1) (0=0) (SYSMIS=999) (6=99) (7=99) into K5Q31r. EXECUTE. VARIABLE LABELS K5Q31r "Needed doctor to communicate with school or other services, past 12 months". VALUE LABELS K5Q31r 0 "No" 1 "Yes" 99 "DK/REF" 999 "No health services". FORMATS K5Q31r (f4.0). * SATISFACTION with communication between doctor and school or other services COMPUTE othcomm = 99. IF (K5Q31r = 0 or K5Q31r = 999) othcomm = 2. IF (K5Q32 = 1) othcomm = 1. IF (K5Q32 = 2 or K5Q32 = 3 or K5Q32 = 4) othcomm = 0. IF (K5Q32 = 5) othcomm = 2. EXECUTE. VARIABLE LABELS othcomm "Very satisfied with communication between doctors and school or other services". VALUE LABELS othcomm 0 "No, less than very satisfied" 1 "YES, very satisfied" 2 "Not needed" 99 "DK/Ref/missing to any". FORMATS othcomm (f4.0).

* #3 Care coordination help – two parts: NEED and RECEIVE * NEED for care coordination or help with care coordination *numb_services - counts types of services used in previous 12 months; *used in skip pattern for care coordination items K5Q20, K5Q21, K5Q22 COMPUTE numb_services = 0. IF (K4Q20r >0 and K4Q20r <100) numb_services = numb_services +1. IF (K4Q21r >0 and K4Q21r <100) numb_services = numb_services +1. IF (K4Q22 = 1) numb_services = numb_services +1. IF (K4Q24 = 1) numb_services = numb_services +1. IF (K4Q25 = 1) numb_services = numb_services +1. EXECUTE. VARIABLE LABELS numb_services "Number of types of services used in past 12 months (medical, dental, mental health, specialist)". VALUE LABELS numb_services 0 "Used none" 1 "Used 1 of four" 2 "Used 2 of four" 3 "Used 3 of four" 4 "Used all 4 service types". FORMATS numb_services (f4.0). RECODE K5Q20 K5Q21 (0=0) (1=1) (6=99) (7=99) (SYSMIS=999) into K5Q20r K5Q21r. EXECUTE. VARIABLE LABELS K5Q20r "Does anyone help to arrange or coordinate child's health care"/ K5Q21r "Could use extra help to arrange/coordinate child's health care". VALUE LABELS K5Q20r K5Q21r 0 "No" 1 "Yes" 99 "DK/REF" 999 "Less than 2 service types, past 12 months". FORMATS K5Q20r K5Q21r (f4.0). * RECEIVES care coordination help COMPUTE carehelp = 99. IF (K5Q20r = 0) and (K5Q21r = 0) carehelp = 2. IF (numb_services <=1) carehelp = 2. IF (K5Q20r = 1) and (K5Q21r = 0) carehelp = 1. IF ((K5Q20r = 99) and (K5Q21r = 0)) or (K5Q21r = 99) or (K5Q22 >=6) carehelp = 99. IF (K5Q22 = 3) carehelp = 1. IF (K5Q22 = 1) or (K5Q22 = 2) carehelp = 0. EXECUTE. VARIABLE LABELS carehelp "Gets help or extra help with care coordination when needed, past 12 months". VALUE LABELS carehelp 0 "No, did not get needed help" 1 "YES, received needed help" 2 "Help and/or coordination not needed" 99 "DK/REF/MISSING to any". FORMATS carehelp (f4.0). *STEP 2: Effective Care Coordination

COMPUTE carecoor = 99. IF ((carehelp = 1) or (carehelp = 2)) and ((drcomm = 1) or (drcomm = 2)) and ((othcomm = 1) or (othcomm = 2)) carecoor = 1. IF (carehelp = 0) or (drcomm = 0) or (othcomm = 0) carecoor = 0. IF (carehelp = 2) and (drcomm = 2) and (othcomm = 2) carecoor = 2. IF (carehelp = 99) or (drcomm = 99) or (othcomm = 99) carecoor = 99. EXECUTE. VARIABLE LABELS carecoor "Effective Care Coordination sub-component of MEDICAL HOME measure".VALUE LABELS carecoor 0 "No, does not have effective care coordination" 1 "YES, has effective care coordination" 2 "None needed OR less than 2 service types". RECODE carecoor (99=SYSMIS). FORMATS carecoor (f4.0). ******************************** MEDICAL HOME COMPOSITE MEASURE************************************ *MEDICAL HOME measure based on the 5 sub-components, using "ON EVERY" scoring approach *pdn and usual criteria must be met; *famcent, norefprb, and carecoor must each either be met or legitimate skip COMPUTE MH_comp = 999. IF ((pdn = 1) and (usual = 1)) and (carecoor = 1 or carecoor = 2) and (norefprb = 1 or norefprb = 2) and (famcent = 1 or famcent = 2) MH_comp = 1. IF (pdn = 0) or (usual = 0) or (carecoor = 0) or (norefprb = 0) or (famcent = 0) MH_comp = 0. IF ((SYSMIS (pdn)) or (SYSMIS (usual)) or (SYSMIS (famcent)) or (SYSMIS (norefprb)) or (SYSMIS (carecoor))) MH_comp =99. EXECUTE. VARIABLE LABELS MH_comp "Child's health care meets criteria for all 5 sub-components of medical home measure: personal doctor or nurse, family centered care, getting referrals when needed, usual source of care, and effective care coordination when needed". VALUE LABELS MH_comp 0 "No, care DOES NOT meet Medical Home criteria" 1 "YES, care MEETS ALL Medical Home criteria". 99 "DK/Ref/missing to 1 or more of 5 sub-components". MISSING VALUES MH_comp (99). FORMATS MH_comp (f4.0).







PERSONAL DOCTOR OR NURSE (PDN)

Sub-component of MEDICAL HOME composite measure

pdn Frequency PercentValid

Percent Cumulative

Percent Valid 0 No, does not have a

personal doctor or nurse 6203 6.8 6.8 6.8

1 YES, has at least one personal doctor or nurse

85177 92.9 93.2 100.0

Total

91380 99.7 100.0

Missing System 262 .3 Total 91642 100.0


Doctor spends enough time, past 12 months

time Frequency PercentValid

Percent Cumulative

Percent Valid 0 Sometimes/Never 14933 16.3 16.4 16.4

1 Usually/Always 73499 80.2 80.9 97.32 No qualifying services 2472 2.7 2.7 100.0Total 90904 99.2 100.0

Missing 99 DK/REF 738 .8 Total 91642 100.0

Doctor listens carefully, past 12 months

listen Frequency PercentValid

Percent Cumulative




Doctor is sensitive to family values and customs

sensitiv Frequency PercentValid

Percent Cumulative




Doctor provides needed information, past 12 months

info Frequency PercentValid

Percent Cumulative




Doctor makes parent feel like partner in child's care, past 12 months

partner Frequency PercentValid

Percent Cumulative




Interpreter provided when needed (primary household language not English)

interpret Frequency PercentValid

Percent Cumulative

Percent Valid 0 Sometimes/Never 733 .8 .8 .8

1 Usually/Always 1254 1.4 1.4 2.22 Interpreter not needed 89647 97.8 97.8 100.0Total 91634 100.0 100.0



FAMILY-CENTERED CARE (FCC)

Sub-component of MEDICAL HOME composite measure

famcent Frequency PercentValid

Percent Cumulative

Percent Valid 0 No, does not have

family-centered care 24461 26.7 27.3 27.3

1 YES, has family-centered care

62528 68.2 69.9 97.2

2 No qualifying services, past 12 months

2472 2.7 2.8 100.0

Total 89461 97.6 100.0 Missing System 2181 2.4 Total 91642 100.0


GETTING NEEDED REFERRALS Sub-component of MEDICAL HOME composite measure

norefprb Frequency PercentValid

Percent Cumulative

Percent Valid 0 Big or small problem

getting needed referral 2538 2.8 2.8 2.8

1 No problem getting needed referral

12527 13.7 13.7 16.5

2 Referral not needed

76297 83.3 83.5 100.0

Total

91362 99.7 100.0


**Usual Sources of Care sub-component score (USUAL)

USUAL SOURCES OF CARE Sub-component of MEDICAL HOME composite measure

usual Frequency PercentValid

Percent Cumulative

Percent Valid 0 No usual source of care

4635 5.1 5.1 5.1

1 YES, has one or more usual source of care

86809 94.7 94.9 100.0

Total

91444 99.8 100.0



Received mental health and/or specialist care, past 12 months (drcomm denominator)

need_drcomm Frequency Percent Valid

Percent Cumulative

Percent Valid 0 No, did not receive either 64590 70.5 70.5 70.5

1 Yes, received one or both 27024 29.5 29.5 100.0Total 91614 100.0 100.0

Missing 99 DK/Ref to both 13 .0999 SYSMISS to both 15 .0Total 28 .0

Total 91642 100.0

Very satisfied with communication among doctors

drcomm Frequency Percent Valid

Percent Cumulative

Percent Valid 0 No, less than very satisfied 7343 8.0 8.0 8.0

1 YES, very satisfied 19067 20.8 20.8 28.82 Not needed 65140 71.1 71.2 100.0Total 91550 99.9 100.0

Missing 99 DK/Ref/missing to any 92 .1Total 91642 100.0

Very satisfied with communication between doctors and school or other services

othcomm Frequency Percent Valid Percent Cumulative

Percent Valid 0 No, less than very satisfied 3931 4.3 4.3 4.3

1 YES, very satisfied 6409 7.0 7.0 11.42 Not needed 80593 87.9 88.6 100.0Total 90933 99.2 100.0

Missing 99 DK/Ref/missing to any 709 .8Total 91642 100.0

Gets help or extra help with care coordination when needed, past 12 months

carehelp Frequency PercentValid

Percent Cumulative

Percent Valid 0 No, did not get needed help 3948 4.3 4.3 4.3

1 YES, received needed help 13768 15.0 15.1 19.42 Help and/or coordination not needed 73630 80.3 80.6 100.0Total 91346 99.7 100.0

Missing 99 DK/REF/MISSING to any 296 .3Total 91642 100.0


EFFECTIVE CARE COORDINATION Sub-component of MEDICAL HOME composite measure

carecoor Frequency PercentValid

Percent Cumulative

Percent Valid 0 No, does have effective care

coordination 11264 12.3 12.4 12.4

1 YES, has effective care coordination

26742 29.2 29.5 42.0

2 None needed OR less than 2 service types, past 12 months

52573 57.4 58.0 100.0

Total

90579 98.8 100.0

Missing System 1063 1.2 Total 91642 100.0


MEDICAL HOME: Children who receive coordinated, ongoing,

comprehensive care within a medical home

mh_comp Frequency PercentValid

Percent Cumulative

Percent Valid 0 No, care DOES NOT

meet medical home criteria 33669 36.7 38.2 38.2

1 Care MEETS ALL medical home criteria

54393 59.4 61.8 100.0

Total

88062 96.1 100.0

Missing 99 DK/Ref/missing to any 3580 3.9 Total 91642 100.0



SAS scoring program

2007 NSCH MEDICAL HOME Composite Measure


4.8 Medical Home

Survey Items Used K4Q04 K5Q40 K5Q41 K5Q42 K5Q43 K5Q44 K5Q46 K5Q11 K5Q10 K4Q01 K4Q02R K4Q22 K4Q24 K5Q30 K5Q31 K5Q32 K4Q20 K4Q21 K4Q25 K5Q20 K5Q21 K5Q22



Description Percent of children ages 0–17 who have a primary care provider (e.g. personal doctor or nurse) AND usual sources of care AND consistently get family-centered care from their doctors and other health care providers AND, if needed, receive effective care coordination AND, if needed, no problems getting referrals


The medical home composite measure and its sub-components are designed to operationalize the American Academy of Pediatrics (AAP) definition of “medical home”. According to this definition, children ideally should have access to “accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective care within a medical home.” The final medical home composite score used to measure this outcome is derived from the five sub-components constructed below.

We are indebted to Deborah Rosenberg, PhD, Research Associate Professor of Epidemiology, School of Public Health, University of Illinois at Chicago, for translating the SPSS Medical Home scoring program developed by CAHMI into SAS format.


Format statements

proc format library = library name; value medhome /*mh_comp*/ 0 = "One or more criteria not met" 1 = "Met all Medical Home criteria"; value pdn_yn /*pdn*/ 0 = "Do not have personal doctor or nurse" 1 = "Yes, has personal doctor or nurse"; value norerefpb /*norefprb*/ 0 = "Big or small problem" 1 = "No problem" 2 = "No referral needed"; value usual /*usuals*/ 0 = "No usual source" 1 = "Yes, has usual source";

value medhome_yn /*K4Q22R K5Q31R K5Q20R K5Q21R*/ 0 = "No" 1 = "Yes"; value need_drcom /*doccommneed*/ 0 = "No specialist or mental health" 1 = "Used 1 or both "; value drsatis /*drcomm_sat*/ 0 = "Less than very satisfied" 1 = "Very satisfied" 2 = "Services not used or not needed"; value othcom 0 = "Less than very satisfied" 1 = "Very satisfied" 2 = "Services not used or not needed"; value carehlp /*carehelp*/ 0 = "Needed but did not get extra help" 1 = "Got help with and/or extra help needed" 2 = "Less than 2 service types or help not needed"; value care_coor /*carecoor*/ 0 = "Did NOT receive all care coordination needed" 1 = "Received all needed components of care coordination" 2 = "Did not need coordination or less than 2 service types"; value fcc /*time listen sensitiv info partner interpret*/ 0 = "Sometimes/never" 1 = "Always/usually" 2 = "Did not see doctor"; value famcent_care /*famcent*/ 0 = "Does not have FCC" 1 = "Yes, has FCC" 2 = "Did not see doctor"; run;

Scoring program

data nsch.new; set nsch.nsch2007_drc; /***************Personal doctor or nurse (PDN) Component *******************/ /*PERSONAL DOCTOR or NURSE sub-component of MEDICAL HOME measure*/ pdn=.; if K4Q04 in (1,2) then pdn = 1; else if K4Q04 = 3 then pdn = 0; else if K4Q04 in (6,7,.M) then pdn = .; label pdn = "Personal Doctor or Nurse sub-component of MEDICAL HOME measure";

/**************Comprehensive Care Component ****************************/ /*GETTING NEEDED REFERRALS sub-component of MEDICAL HOME measure*/ norefprb = .; if K5Q10 = 0 then norefprb = 2; else if K5Q10 in (6,7,.M) then norefprb = .; else if K5Q11 in (1,2) then norefprb = 0; else if K5Q11 = 3 then norefprb = 1; else if K5Q11 in (6,7,.M) then norefprb = .; label norefprb = "Getting Needed Referrals sub-component of MEDICAL HOME measure"; /*USUAL SOURCES FOR SICK AND WELL CARE sub-component of MEDICAL HOME measure*/ usuals = .; if K4Q01 in (1,3) and K4Q02R in (1,3,4,5,6,8,10) then usuals = 1; else if K4Q01 = 2 or K4Q02R in (2,7,9) then usuals = 0; else if K4Q01 in (6,7) or K4Q02R in (.M,96,97) then usuals = .; label usuals = "Usual Sources for Sick and Well Care sub-component of MEDICAL HOME measure"; /*******************Coordinated Care Component ************************/ /*EFFECTIVE CARE COORDINATION sub-component of MEDICAL HOME measure*/ K4Q22R = K4Q22; if K4Q22 in (6,7) then K4Q22R = .; label K4Q22R = "Received counseling or tx from mental hlth professional, last 12 mos"; if K4Q22 = 1 or K4Q24 = 1 the doccommneed = 1; nelse if K4Q22 = 0 or K4Q24 = 0 then doccommneed = 0; else doccommneed = .; label doccommneed = "Doctor communication needed if specialist, MH, PT/OT/ST, sub abuse, or home hlth care used"; drcomm_sat = .; if doccommneed = 0 then drcomm_sat = 2; else if doccommneed = . then drcomm_sat = .; else if K5Q30 = 1 h n drcomm_sat = 1; t e else if K5Q30 in (2,3,4) then drcomm_sat = 0; else if K5Q30 = 5 then drcomm_sat = 2; else if K5Q30 in 6,7,.M) then drcomm_sat = .; (else if K5Q30 = .L then drcomm_sat = 2; label drcomm_sat = "Level of satisfaction with doctor to doctor communication"; K5Q31R = K5Q31; if K5Q31 in (6,7) then K5Q31R = .; label K5Q31R = "Needed doctor communication w/ school or other services" othcomm = . ;if K5Q31 = 0 then othcomm = 2; else if K5Q31 in (6,7) then othcomm = .; else if K5Q32 = 1 h n othcomm = 1; t e else if K5Q32 in (2,3,4) then othcomm = 0; else if K5Q32 = 5 then othcomm = 2;

else if K5Q32 in (6,7,.M) then othcomm = .; else if K5Q32 = .L then othcomm = 2; label othcomm = "Level of satisfaction with dr communication w/ school or other services"; K5Q20R = K5Q20; if K5Q20 in (6,7) then K5Q20R = .; label K5Q20R = "Does anyone help to arrange or coordinate child's health care"; K5Q21R = K5Q2 ;1 if K5Q21 in (6,7) then K5Q21R = .; label K5Q21R = "Could use extra help to arrange/coordinate child's health care" carehelp = .; if K5Q20 = .L then carehelp = 2; else if K5Q20 = .M then carehelp = .; else if K5Q20 = 0 and K5Q21 = 0 then carehelp = 2; else if K5Q20 in (6,7) and K5Q21 = 0 then carehelp = .; else if K5Q21 in (6,7) then carehelp = .; else if K5Q22 in (6,7) then carehelp = .; else if K5Q20 = 1 and K5Q21 = 0 then carehelp = 1; else if K5Q22 = 3 then carehelp = 1; else if K5Q22 in (1,2) then carehelp = 0; label carehelp = "Gets help with care coordination when needed"; carecoor = .; if carehelp = . or drcomm_sat = . or othcomm = . then carecoor = .; else if carehelp = 2 and drcomm_sat = 2 and othcomm = 2 then carecoor = 2; else if carehelp in (1,2) and drcomm_sat in (1,2) and othcomm in (1,2) then carecoor = 1; else if carehelp = 0 or drcomm_sat = 0 or othcomm = 0 then carecoor = 0; label carecoor = "Effective Care Coordination sub-component of MEDICAL HOME measure"; /********************* Family Centered Care Component ********************/ /*FAMILY-CENTERED CARE sub-component of MEDICAL HOME measure*/ time=.; if K5Q40 in (6,7) then time = .; else if K5Q40 = .L then time = 2; else if K5Q40 = 1 or K5Q40 = 2 then time = 0; else if K5Q40 = 3 or K5Q40 = 4 then time = 1; label time = "How often doctor spends enough time"; listen=.; if K5Q41 in (6,7) then listen = .; else if K5Q41 = .L then listen = 2; else if K5Q41 = 1 or K5Q41 = 2 then listen = 0; else if K5Q41 = 3 or K5Q41 = 4 then listen = 1; label listen = "How often doctor listens carefully"; sensitiv=.;

if K5Q42 in (6,7) then sensitiv = .; else if K5Q42 = .L then sensitiv = 2; else if K5Q42 = 1 or K5Q42 = 2 then sensitiv = 0; else if K5Q42 = 3 or K5Q42 = 4 then sensitiv = 1; label sensitiv = "How often doctor sensitive to family values and customs"; info=.; if K5Q43 in (6,7) then info = .; else if K5Q43 = .L then info = 2; else if K5Q43 = 1 or K5Q43 = 2 then info = 0; else if K5Q43 = 3 or K5Q43 = 4 then info = 1; label info = "How often doctor provides needed information"; partner=.; if K5Q44 in (6,7) then partner = .; else if K5Q44 = .L then partner = 2; else if K5Q44 = 1 or K5Q44 = 2 then partner = 0; else if K5Q44 = 3 or K5Q44 = 4 then partner = 1; label partner = "How often doctor makes parent feel like partner in child's care "; interpret=.; if K5Q46 in (6,7) then interpret = .; else if K5Q46 = .L then interpret = 2; else if K5Q46 = 1 or K5Q46 = 2 then interpret = 0; else if K5Q46 = 3 or K5Q46 = 4 then interpret = 1; label interpret = "How often able to access interpreter help, if needed (non-Eng PHL only)"; famcent = .; if time = . or listen = . or sensitiv = . or info = . or partner = . or interpret = . then famcent = .; else if time = 2 h n famcent = 2; t eelse if time in (1,2) and listen in (1,2) and sensitiv in (1,2) and info in (1,2) and partner in (1,2) and interpret in (1,2) hen famcent = 1; telse if time = 0 or listen = 0 or sensitiv = 0 or info = 0 or partner = 0 or interpret = 0 then famcent = 0; label famcent = "Family-centered care sub-component of MEDICAL HOME measure"; /******************** MEDICAL HOME COMPOSITE MEASURE******************/ mh_comp = .; if pdn = . or usuals = . or famcent = . or norefprb = . or carecoor = . then mh_comp = .; else if pdn = 2 and usuals = 2 and famcent = 2 and norefprb = 2 and carecoor = 2 then mh_comp = .; else if pdn = 1 and usuals = 1 and norefprb in (1,2) and famcent in (1,2) and carecoor in (1,2) then mh_comp = 1; else if pdn = 0 or usuals = 0 or norefprb = 0 or famcent = 0 or carecoor = 0 then mh_comp = 0; label mh_comp = "Children whose health care meets criteria for all 5 components of medical home: personal doctor or nurse, usual source of care, family centered care, getting referrals when needed, and effective care coordination when needed";





SAS scoring program

Personal Doctor or Nurse (PDN) Component **PDN sub-component score (PDN) Personal Doctor or Nurse sub-component of MEDICAL HOME measure Cumulative Cumulative pdn Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Do not have personal dr or nurse 6203 6.79 6203 6.79 Yes, has personal dr or nurse 85177 93.21 91380 100.00

Frequency Missing = 262 Family-Centered Care Component **Interim variables for Family-Centered Care sub-component Doctors usually or always spend enough time, past 12 months Cumulative Cumulative time Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Sometimes/never 14933 16.43 14933 16.43 Always/usually 73499 80.85 88432 97.28 Did not see doctor 2472 2.72 90904 100.00

Frequency Missing = 738 Doctors usually or always listen carefully, past 12 months Cumulative Cumulative listen Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Sometimes/never 7802 8.57 7802 8.57 Always/usually 80807 88.72 88609 97.29 Did not see doctor 2472 2.71 91081 100.00

Frequency Missing = 561 Doctors are usually or always sensitive to values and customs Cumulative Cumulative sensitiv Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Sometimes/never 7313 8.05 7313 8.05 Always/usually 81019 89.22 88332 97.28 Did not see doctor 2472 2.72 90804 100.00

Frequency Missing = 838 Doctors usually or always provide needed information, past 12 months Cumulative Cumulative info Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Sometimes/never 11591 12.73 11591 12.73 Always/usually 76955 84.55 88546 97.28 Did not see doctor 2472 2.72 91018 100.00


Doctors usually or always make the family feel like a partner, past 12 months Cumulative Cumulative partner Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Sometimes/never 9380 10.30 9380 10.30 Always/usually 79242 86.99 88622 97.29 Did not see doctor 2472 2.71 91094 100.00

Frequency Missing = 548 An interpreter is usually or always available when needed, past 12 months Cumulative Cumulative interpret Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Sometimes/never 733 0.80 733 0.80 Always/usually 1254 1.37 1987 2.17 Did not see doctor 89647 97.83 91634 100.00

Frequency Missing = 8 **Family-Centered Care sub-component score (FAMCENT) Family-centered care sub-component of MEDICAL HOME measure Cumulative Cumulative famcent Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Does not have FCC 24461 27.34 24461 27.34 Yes, has FCC 62528 69.89 86989 97.24 Did not see doctor 2472 2.76 89461 100.00

Frequency Missing = 2181 Comprehensive Care Component ** No Problems Getting Needed Referrals sub-component score (NOREFPRB) Getting Needed Referrals sub-component of MEDICAL HOME measure Cumulative Cumulative norefprb Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Big or small problem 2538 2.78 2538 2.78 No problem 12527 13.71 15065 16.49 No referral needed 76297 83.51 91362 100.00

Frequency Missing = 280 **Usual Sources of Care sub-component score (USUAL) Usual Sources for Sick & Well Care sub-component of MEDICAL HOME measure Cumulative Cumulative usuals Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ No usual source 4635 5.07 4635 5.07 Yes, has usual source 86809 94.93 91444 100.00


Coordinated Care Component **Interim variables Effective Care Coordination sub-component Doctor communication needed if used specialist, mental health, physical, occupational or other special therapy, substance abuse, or home health care Cumulative Cumulative doccommneed Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ No specialist or mental health 64590 70.50 64590 70.50 Used 1 or both 27024 29.50 91614 100.00

Frequency Missing = 28 Level of satisfaction with doctor to doctor communication Cumulative Cumulative drcomm_sat Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Less than very satisfied 7343 8.02 7343 8.02 Very satisfied 19067 20.83 26410 28.85 Not needed or did not use services 65140 71.15 91550 100.00

Frequency Missing = 92 Level of satisfaction with dr communication with school or other services Cumulative Cumulative othcomm Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Less than very satisfied 3931 4.32 3931 4.32 Very satisfied 6409 7.05 10340 11.37 Not needed or did not use services 80593 88.63 90933 100.00

Frequency Missing = 709 Gets help with care coordination when needed Cumulative Cumulative carehelp Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ Needed but did not get extra help 3948 4.32 3948 4.32 Got help with and/or extra help needed 13768 15.07 17716 19.39 Less than 2 service types or help not needed 73630 80.61 91346 100.00

Frequency Missing = 296 **Effective Care Coordination sub-component score (CARECOOR) Effective Care Coordination sub-component of MEDICAL HOME measure Cumulative Cumulative carecoor Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ No, needed but did not receive 11264 12.44 11264 12.44 Yes, received effective coordination 26742 29.52 38006 41.96 No need or less than 2 service types 52573 58.04 90579 100.00


Medical Home Composite Measure **Medical Home Composite Measure score (MH_COMP) Children whose health care meets criteria for all 5 medical home components: personal doctor or nurse, usual source of care, family centered care, getting referrals when needed, and effective care coordination when needed Cumulative Cumulative mh_comp Frequency Percent Frequency Percent ƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒƒ One or more criteria not met 33669 38.23 33669 38.23 Met all Medical Home criteria 54393 61.77 88062 100.00


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2007 NSCH Text and response options for questions used to assess Medical Home



SECTION 4: HEALTH CARE ACCESS AND UTILIZATION

K4Q01: Is there a place that (S.C.) USUALLY goes when (he/she) is sick or you need advice about (his/her) health?

If Yes to K4Q01: K4q02: What kind of place is it?

(1) YES (2) THERE IS NO PLACE [SKIP TO K4Q04] (3) THERE IS MORE THAN ONE PLACE (6) DON’T KNOW [SKIP TO K4Q04] (7) REFUSED [SKIP TO K4Q04]

(01) DOCTOR’S OFFICE (02) HOSPITAL EMERGENCY ROOM (03) HOSPITAL OUTPATIENT DEPARTMENT (04) CLINIC OR HEALTH CENTER (05) SCHOOL (NURSE’S OFFICE, ATHLETIC TRAINER’S OFFICE, ETC) (06) FRIEND/RELATIVE (07) MEXICO/OTHER LOCATIONS OUT OF US (08) SOME OTHER PLACE (09) DOES NOT GO TO ONE PLACE MOST OFTEN (96) DON’T KNOW (97) REFUSED

K4Q04: A personal doctor or nurse is a health professional who knows your child well and is familiar with your child’s health history. This can be a general doctor, a pediatrician, a specialist doctor, a nurse practitioner, or a physician’s assistant. Do you have one or more persons you think of as (S.C.)’s personal doctor or nurse?

(1) YES, ONE PERSON (2) YES, MORE THAN ONE PERSON (3) NO (6) DON’T KNOW (7) REFUSED

SECTION 5: MEDICAL HOME

K5Q10: During the past 12 months, did (S.C.) need a referral to see any doctors or receive any services? If Yes to K5Q10:

K5Q11: Was getting referrals a big problem, a small problem, or not a problem?

(1) YES (2) NO [SKIP TO K5Q20] (6) DON’T KNOW [SKIP TO K5Q20] (7) REFUSED [SKIP TO K5Q20]

(1) Big problem (2) Small problem (3) Not a problem (6) DON’T KNOW (7) REFUSED

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CATI INSTRUCTION: Sum up the number of services from Section 4, Subdomain 2

DEFINE VARIABLE NUMB_SERVICES = 0. IF K4Q20 ≥ 1, NUMB_SERVICES = NUMB_SERVICES + 1 IF K4Q21 ≥ 1, NUMB_SERVICES = NUMB_SERVICES + 1 IF K4Q22 = 1, NUMB_SERVICES = NUMB_SERVICES + 1 IF K4Q24 = 1, NUMB_SERVICES = NUMB_SERVICES + 1 IF K4Q25 = 1, NUMB_SERVICES = NUMB_SERVICES + 1

CATI INSTRUCTION (K5Q20): IF NUMB_SERVICES IS < 2, THEN SKIP TO K5Q31.

K5Q20: Does anyone help you arrange or coordinate (S.C.)’s care among the different doctors or services that (he/she) uses? K5Q21: During the past 12 months, have you felt that you could have used extra help arranging or coordinating (S.C.)’s care among these different health care providers or services? If Yes to K5Q21:

K5Q22: During the past 12 months, how often did you get as much help as you wanted with arranging or coordinating (S.C.)’s care?


(1) YES (2) NO [SKIP TO K5Q30] (6) DON’T KNOW [SKIP TO K5Q30] (7) REFUSED [SKIP TO K5Q30] (1) Never (2) Sometimes (3) Usually (6) DON’T KNOW (7) REFUSED

K5Q30: Overall, are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied with the communication among (S.C.)’s doctors and other health care providers?





CATI INSTRUCTION (K5Q31): IF NUMB_SERVICES = 0, THEN SKIP TO K5Q45.

K5Q31: Do (S.C.)’s doctors or other health care providers need to communicate with:

(a) Child care providers or early intervention program (ages 0-2 years)?

(b) Child care providers, school, or special education program (ages 3-5 years)?

(c) School or special education program (ages 6-17 years, non-

(d) School or special education program (ages 6-11 years, CSHCN)?

(e) School, special education program, or vocational education program (ages 12-17 years, CSHCN)?

If Yes to K5Q31: K5Q32: Overall, are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied with that communication?

(1) YES (2) NO [SKIP TO K5Q40] (6) DON’T KNOW [SKIP TO K5Q40] (7) REFUSED [SKIP TO K5Q40]


K5Q40: During the past 12 months, how often did (S.C.)’s doctors and other health care providers spend enough time with (him/her)?


K5Q41: During the past 12 months, how often did (S.C.)’s doctors and other health care providers listen carefully to you?


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K5Q42: When (S.C.) is seen by doctors or other health care providers, how often are they sensitive to your family’s values and customs?


K5Q43: During the past 12 months, how often did you get the specific information you needed from (S.C.)’s doctors and other health care providers?


K5Q44: During the past 12 months, how often did (S.C.)’s doctors or other health care providers help you feel like a partner in (his/her) care?


K5Q45: During the past 12 months, did you (or S.C.) need an interpreter to help speak with (his/her) doctors or other health care providers?


If Yes to K5Q45: (1) Never K5Q46: When you (or S.C.) needed an interpreter,

how often were you able to get someone other than a family member to help you speak with (his/her) doctors or other health care providers?

(2) Sometimes (3) Usually (4) Always (6) DON’T KNOW (7) REFUSED

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APPENDIX E

APPENDIX E

List of selected Publications using Medical Home measures from the

NS-CSHCN and the NSCH

APPENDIX E

Medical home articles using 2001 NS-CSHCN:

Baruffi G, Miyashiro L, Prince CB, Heu P. Factors associated with ease of using community-based systems of care for CSHCN in Hawai’i. Maternal and Child Health Journal, 2005; 9, Supplement 2: S99-S108. Benedict RE. Quality medical homes: meeting children’s needs for therapeutic and supportive services. Pediatrics 2008; 121(1):e1-e8. Bethell CD, Read D, & Brockwood K. Using existing population-based data sets to measure the American Academy of Pediatrics definition of medical home for all children and children with special health care needs. Pediatrics 2004; 113(Suppl):1529-1537.

Fulda KG, Lykens K, Bae S, Singh K. Factors for accessing a medical home vary among CSHCN from different levels of socioeconomic status. Maternal and Child Health Journal 2009; 13:445-456.

Lewis C, Robertson AS, Phelps S. Unmet dental care needs among children with special health care needs: implications for the medical home. Pediatrics 2005; 116(3):e426-31. McPherson M, Weissman G, Strickland BB, van Dyck PC, Blumberg SJ, Newacheck PW. Implementing community- based systems of services for children and youths with special health care needs: how well are we doing? Pediatrics 2004; 113, Supplement: 1538-1544. Nageswaran S, Roth MS, Kluttz-Hile CE, & Farel A. Medical homes for children with special healthcare needs in North Carolina. North Carolina Medical Journal 2006; 67(2):103-9. Oswald DP, Bodurtha JN, Willis JH, Moore MB. Underinsurance and key health outcomes for children with special health care needs. Pediatrics. 2007; 119(2):e341-7. Rosenberg D, Onufer C, Clark G, Wilkin T, Rankin K, Gupta K. The need for care coordination among children with special health care needs in Illinois. Maternal and Child Health Journal, 2005; 9, Supplement 2: S41-S47. Strickland B, McPherson M, Weissman G, van Dyck P, Huang ZJ, Newacheck PW. Access to the medical home: results of the National Survey of Children with Special Health Care Needs. Pediatrics 2004; 113, Supplement: 1485-1492. Tippy K, Meyer K, Aronson R, Wall T. Characteristics of coordinated ongoing comprehensive care within a medical home in Maine. Maternal and Child Health Journal, 2005; 9, Supplement 2: S13-S21.

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APPENDIX E

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U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics. Progress toward Implementing Community-Based Systems of Services for Children with Special Health Care Needs. Washington, DC. 2003.

Wang G,& Watts C. Genetic counseling, insurance status, and elements of medical home: analysis of the national survey of children with special health care needs. Maternal and Child Health Journal 2007 11(6):559-67. Epub 2007 Feb 27.

Medical home articles using 2003 NSCH:

Allred NJ, Wooten KG, Kong Y. The association of health insurance and continuous primary care in the medical home on vaccination coverage for 19- to 35-month-old children. Pediatrics. 2007; 119, Supplement: S4-S11. Bethell, CD, Read, D, & Brockwood, K. Using existing population-based data sets to measure the American Academy of Pediatrics definition of medical home for all children and children with special health care needs. Pediatrics 2004; 113(5Suppl):1529-1537. Brachlow AE, Ness KK, McPheeters ML. Gurney, J.G. Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children's Health. Archives of Pediatrics and Adolescent Medicine. 2007; 161, 4: 399-405. Bramlett MD, Radal LF, Blumberg SJ. The health and well-being of adopted children. Pediatrics. 2007; 119, Supplement 1; S54-S60. Mulvihill BA, Altarac M, Swaminathan S, Kirby RS, Kulczycki A, Ellis DE. Does access to a medical home differ according to child and family characteristics, including special-health-care-needs status, among children in Alabama? Pediatrics. 2007; 119, Supplement: S107-S113.

Zeni MB, Sappenfield W, Thompson D, Chen H. Factors associated with not having a personal health care provider for children in Florida. Pediatrics 2007; 119, Supplement : S61-S67.

APPENDIX E

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Documents

Medical Home Manual - Data Resource Center for Child and